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Events

Click your the map above to view what is happening in your state for Rare Disease Day 2015.

Tell us about the event(s) you are planning through our event form.

Social Media Events

Event: NORD and ABC Tweet Chat
Event Date: 2/17/2015
Description In celebration of Rare Disease Day, NORD will co-sponsor a tweetchat on the topic of rare diseases with ABC News’ Dr. Richard Besser, Chief of the ABC News Medical/Health Unit, on Tuesday, February 17, at 1:00 p.m. ET. For more information, visit Rare Disease Day USA. Keep the conversation going: After the tweetchat, you can continue the conversation using this year’s Rare Disease Day hashtags: #RDD2015 and #RareDiseaseDay. See you on Twitter!
We look forward to your involvement as we work together to bring widespread recognition of rare diseases as a public health challenge.

Event: Rare Disease Day Tweet Chat
Organization: Center for Jewish Genetics
Event Date: 2/26/2015
Description: In honor of Rare Disease Day, the Center for Jewish Genetics (CJG) will be co-sponsoring a tweetchat with Global Genes and Dr. Amy Lossie of the Beautiful MRKH Foundation, on Thursday, February 26th, at 1:00 p.m. ET. Use hashtag: #RareDiseaseChat For more information, visit Center for Jewish Genetics.

Event: 2nd Annual Rare Disease Day Photo Awareness Campaign and Handprint Wall
Organization: FIU Rotaract
Contact Name: Omela Gokool
Email: rotaract@fiu.edu
Event Date: 2/27/2015
Description: The 2nd Annual Rare Disease Day Photo Awareness Campaign and Handprint Wall will be held on February 27, 2015. The awareness photos will be at the Graham Center (GC) Pit from 10am – 3pm and the handprint wall will be held at the Betty Chapman Plaza (between Graham Center and Primera Casa), from 4pm – 6pm. For more information, go to our Facebook page.

Event: BeHEARD Science Competition
Organization: Rare Genomics Institute
Contact Name: Arvin Gouw
Email: Event Date: 2/27/2015
Description: At Rare Genomics Institute, we are more than just an organization. We are a community dedicated to helping rare disease patients find hope for a cure. Rare diseases can affect any family at any time. Rare diseases have no boundaries whether social, economic, or geographic. We at RGI understand the pain that rare disease patients and their families go through – we care deeply about helping our patients. This is why BeHEARD (Helping Empower & Accelerate Research Discoveries), as a division of RGI, is determined to leverage the resources for individual rare diseases (defined as diseases with prevalence of less than one percent of the population) is nearly impossible, thus BeHEARD pools together resources for any of the 7,000 rare diseases out there. Having accumulated the resources, we understand that while rare disease patients face similar challenges, each rare disease is unique in its own way.

Event: Move YOUR Way for Rare Disease Day
Organization: Friedreich’s Ataxia Research Alliance (FARA)
Contact Name: Evelyn Wu
Email: evelyn.wu@curefa.org
Event Date: 2/28/2015
Description: The month leading up to Rare Disease Day, from February 5th-28th, we want you to show the world how you move. Join the Move YOUR Way for Rare Disease Day virtual event on Facebook, and post photos of yourselves, family, friends, coworkers, and classmates moving under your own power. Visit www.curefa.org/advocacy.html for more information on how to get involved and see people’s photos at www.facebook.com/MoveYOURWay.

Event: Rare Disease Day Awareness
Organization: No More Band Aids Just Cures
Contact Name: Diana Willette
Email: intheprint@icloud.com
Event Date: 2/28/2015
Description: This month-long event will promote Rare Disease Day Awareness on social media networking sites; No More Band Aids Just Cures on Facebook and Tumblr. Artwork will also be created and posted for Rare Disease Day to help with Rare Disease Day Awareness.

Event: #RareDiseaseDay Tweetfest
Contact Name: Laura Paxton
Email: laurapaxton3@gmail.com
Event Date: 2/28/2015
Description: February 28 is Rare Disase Day US. Join our Tweetfest if you would like to help educate the public about the subject. Informational links, memes, graphics, and tweet suggestions will be featured here. Tweet all day or just send one tweet in honor of our cause. Being diagnosed with a rare disease is scary because finding the right treatment can be very difficult. The more the public knows, the more we can do! Thank you for joining!
Visit our Facebook page for more information.

Event: Rare Disease Awareness Day
Organization: National Association for Premenstrual Dysphoric Disorder
Email: amanda@napmdd.org
Event Date: 2/28/2015
Description: The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign targets primarily the general public and also seeks to raise awareness among policy-makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.To participate, simply change your Facebook or Twitter profile pic to the newly established PMDD Awareness Ribbon available at :us.napmdd.org/pmdd-ribbon.html and tell one woman you know about what PMDD is and isn’t.

Event: Give RARE (online)
Event Date: 3/3/2015
Description: Give RARE is a single day for the world to GIVE to RARE disease. In partnership with Zenzaga, the Give RARE technology platform allows rare disease nonprofits to sign-up easily to create a donation page, raise funds for their cause, and get access to win prize funds from sponsors. Grants will be given throughout the day.
Register your cause today.

Event: Global Genes 1st Annual Denim Dash Virtual 5k Run/Walk for Rare Disase (Virtual/Global)
Event Date: 3/21/2015 – 3/29/2015
Description: The Denim Dash was created through collaborative efforts between Orphan Drug Solutions and Global Genes as their first annual virtual 5k event. This virtual 5k is designed to ensure that anyone, anywhere, can participate and show their support and raise awareness for patients, family and friends of the rare disease community. The cost to register is $35 and includes Denim Dash t-shirt, race bib and Blue Denim Genes Ribbon. In order to receive a t-shirt, registration must be completed by 3/6/2015. Register here.

Event: Rare Disease Day: NeuroNEXT NN103 Rituximab in myasthenia gravis trial to hold a patient information webinar
Organization: NINDS: NeuroNEXT
Contact Name: Safawa Huq or Hong Vu
Email: richard.nowak@yale.edu
Event Date: 4/10/2015
Description: Rare Disease Day: NeuroNEXT NN103 Rituximab in myasthenia gravis trial to hold a patient information webinar. Please find additional detals at www.neuronext.org.

Alabama

If you would like to help us organize an advocacy event in this state, sign-up here.

PROCLAMATION: Congratulations to rare disease advocates in Alabama for receiving a proclamation from Governor Robert Bentley recognizing February 28, 2015 as Rare Disease Day in the state of Alabama. View proclamation here.

Event: UAB Genetics and Children’s of Alabama Rare Disease Day
Organization: UAB/Children’s of Alabama
Contact Name: Sarah Yang
Email: s_repicky@yahoo.com
Event Address: Children’s of Alabama, 1601 4th Avenue South, Birmingham, AL 35233
Event date: 3/16/2015
Description: This joint lecture series will be presented at Children’s Hospital. There will be a medical lecture series for professionals, and a family lecture series will cover the topics of identifying potential therapies, how to research them and coordinate with a care team, and financial planning for families with medically complex/special needs children. Additionally, our roundtable discussion this year will focus on IEPs and 504s.

Alaska

If you would like to help us organize an advocacy event in this state, sign-up here.

Arizona

If you would like to help us organize an advocacy event in this state, sign-up here.

PROCLAMATION: Congratulations to Guadalupe Mabry and all rare disease advocates in Arizona for receiving a proclamation from Governor Douglas A. Ducey recognizing February 28, 2015 as Rare Disease Day. View proclamation here and with Guadalupe here.

Arkansas

If you would like to help us organize an advocacy event in this state, sign-up here.

California

California Rare Disease Day State House Event
Monday, March 2, 2015
State Capitol Building
Capitol Steps – 10:00am-10:45am
Room 126 - 10:45am -11:30am
10th and L Streets, Sacramento, CA 95814
If you would like to attend this event, sign-up here.

Event: Rare Disease Education Day & Service Learning
Organization: California State East Bay
Contact Name: Darice Ingram on behalf of student Maria Isabel Bueso
Email: darice.ingram@csueastbay.edu
Event Address: 4700 Ygnacio Valley Road, Concord, California 94521
Event date: 2/25/2015
Description: Join Maria Isabel Bueso as she educates California State University, East Bay students, staff, faculty, and community about her rare disease and many others that impact lives every day. Isabel is a freshman pre-nursing/health science student and Children’s Hospital ambassador who has a passion to educate people about rare diseases. Her quest is to educate the public that over 30 million Americans are affected by over 7,000 rare diseases. The event will teach attendees how to help patients with rare diseases, where to find supportive information, and how to support people around them with rare diseases. Free cookies, cupcakes, candies, balloons and water bottles will be given away while supplies last. Event is open to the public and held on Wed. Feb. 25th, 11am-6pm Concord Quad.

Event: 6th Annual KGI Rare Disease Day
Organization: Keck Graduate Institute
Contact Name: Ian Phillips
Email: kelly_esperias@kgi.edu
Event Address: 535 Watson Drive, Claremont, California 91711
Event Date: 2/27/2015
Description: The President’s Precision Medicine Initiative is a $215 million investment aimed at accelerating biomedical discoveries and improving treatment options for diseases, including those classified as rare. In recognition of that initiative, the theme of Keck Graduate Institute’s 6th Annual Rare Disease Day on February 27 is “Precision Medicine for Rare Disease.” Rare Disease Day is an international advocacy day designed to bring widespread recognition of rare diseases as a global health challenge. Each year, KGI’s Center for Rare Disease Therapies recognizes the day with a speaker series, panel discussion and the screening of a documentary film on an aspect of rare disease.

This year’s keynote speaker is Dr. Stanley Crooke, a pioneer in the field of precision medicine known as antisense therapy, a gene-silencing technique. Instead of repairing the gene that causes the disease, it aims to “silence” the gene’s effect. As the founder, chairman, and CEO of Isis Pharmaceuticals, Dr. Crooke has led the scientific development of antisense technology and engineered the creation of one of the largest and more advanced development pipelines in the biotechnology industry. Isis has achieved commercialization of the first two antisense drugs to reach the market, Vitravene and KYNAMRO®, which was approved in 2013. It is the first to be approved for lifelong treatment of a chronic rare disease, homozygous familial hypercholesterolemia.

Event: 6th Annual Sanford-Burnham Rare Disease Day Symposium; Doctor-is-in-Session
Organization: Sanford-Burnham Medical Research Institute
Contact Name: Amy Zimmon
Email: azimmon@sanfordburnham.org
Event Address: 10901 North Torrey Pines Road, La Jolla, California 92037
Event Date: 2/28/2015
Description: Simple sugars can treat patients with rare diseases, but these supplements can also impact aging, immune function, and development of diabetes. In this innovative half-day session, patients and their advocates are given the opportunity to interact with a variety of researchers and clinicians in an intimate, collaborative environment. For more information about the Sanford-Burnham Rare Disease Day “Doctor-Is-In” session, please see event website.

Event: PCD Regional Education Day
Organization: PCD Foundation and PCD Center at Stanford
Contact Name: Jackie Zirbes
Email: jmzirbes@stanford.edu
Event Address: Frances C. Arrillaga Alumni Center, Stanford, 326 Galvez Street, Palo Alto, California 94305-6105
Event Date: 2/28/2015
Description: A celebration of Rare Disease Day with informational lectures, direct interaction with recognized experts in the field and networking with those touched by PCD. Continental breakfast starting at 8:00 am followed by a formal program starting at 9:00 am. Lunch boxes will be served at noon.

Event: FREE CME/CNE Activity
Organization: Scleroderma Foundation
Email: kconnolly@scleroderma.org
Event Address: 4240 La Jolla Village Drive, La Jolla, California 92037
Event Date: 2/28/2015
Description: The general objective will be to raise awareness about early diagnosis of SSc-pulmonary hypertension and SSc-interstitial lung disease to discuss ways to effectively treat and manage the conditions. This will involve recent/appropriate/updated knowledge dissemination to clinicians and patients.

Event: PCD Regional Education Day
Organization: PCD Foundation and PCD Center at Stanford
Contact Name: Jackie Zirbes
Email: jmzirbes@stanford.edu
Event Address: Frances C. Arrillaga Alumni Center, Stanford, 326 Galvez Street, Palo Alto, California 94305-6105
Event Date: 2/28/2015
Description: A celebration of Rare Disease Day with informational lectures, direct interaction with recognized experts in the field and networking with those touched by PCD. Continental breakfast starting at 8:00 am followed by a formal program starting at 9:00 am. Lunch boxes will be served at noon.

Event: TAAF Taproom Fundraiser
Organization: The Aneurysm and AVM Foundation
Contact Name: Dina L. Chon
Email: dina@taafonline.org
Event Address: Soda Popiniski’s, 1548 California, San Francisco, California 94109
Event Date: 2/28/2015
Description: The Aneurysm and AVM Foundation (TAAF) is dedicated to improving the lives, support networks, and medical care of those affected by aneurysm and other types of vascular malformation of the brain. We will be hosting a Taproom Fundraiser Saturday, February 28th in an effort to raise awareness and in celebration of Rare Disease Day. TAAF board surgeons, staff and friends will be on hand as guest bartenders where tips will benefit our Annual Awareness Walk in May. Mingle with the neurosurgeons and drink a pint for a good cause. Event Details: 6-9pm at Soda Popiniski’s. There will be raffle prizes and more.

Colorado

Colorado Rare Disease Day State House Event
Thursday, February 26, 2015
**This event has been canceled. A new date and time will be announced soon.**
State Capitol Building
200 East Colfax Avenue, Denver, Colorado 80203
If you would like more information for this event, sign-up here.

Connecticut

PROCLAMATION: Congratulations to Connecticut rare disease advocates for receiving a proclamation from Governor Dannel P. Malloy officially declaring February 28, 2015 as Rare Disease Day in the state of Connecticut. View the proclamation here.

Connecticut Rare Disease Day State House Event
Wednesday, February 25, 2015
State Capitol Building
210 Capitol Avenue, Hartford, Connecticut
10:00am-12:00pm
If you would like register for this event, sign-up here.

Event: Rare Diseases Awareness Event 2015
Organization: UCONN School of Medicine, Disabilities Interest Group
Contact Name: Sophia Walker
Email: sowalker@uchc.edu
Event Address: 263 Farmington Avenue, Farmington, Connecticut 06269
Event Date: 2/25/2015
Description: The UCONN School of Medicine Disabilities Interest Group is hosting the Rare Diseases Awareness Event on the evening of February 25th at the University of Connecticut Health Center. Join us in celebrating individuals who have rare diseases and the many researchers and physicians who are fighting to find cures for these conditions. Listen to patients, doctors, and students share their experiences and learn about rare diseases! Admission is free and refreshments will be provided. Everyone is welcome! If you are interested in speaking, would like more information, or have any questions, please contact us!

Event: Morgan’s Fund: Illumin8ing Rare
Organization: The Morgan Leary Vaughan Fund
Contact Name: Mary Midolo
Event Address: Stratford, Connecticut
Event Date: 2/28/2015 8:00pm – 9:00pm (EST)
Description: Illumin8ing Rare provides a moment of reflection and appreciation for all those who have been directly affected by a rare disease. It is an opportunity to celebrate survivors and to share tributes of those who are no longer with us. We will share photos of the event using the hashtags #RareDiseaseDay and #RDD2015. For more information, visit www.illumin8ingrare.eventbrite.com.

Delaware

PROCLAMATION: Congratulations to Delaware rare disease advocates for receiving a proclamation from Governor Jack Markell officially declaring February 28, 2015 as Rare Disease Day in the state of Delaware. View the proclamation here.

Delaware Rare Disease Day State House Event
Thursday, March 19, 2015
Delaware State Legislative Hall
10:00am-2:00pm
For more information, sign-up here.

Event: Nemours Rare and Chronic Disease Research Event
Organization: Nemours Alfred I. duPont Hospital for Children
Contact Name: Terry Pedicone
Email: Terry.Pedicone@Nemours.org
Event Address: Anthony N. Fusco, Sr. Atrium – Nemours Alfred I. duPont Hospital for Children, 1600 Rockland Road, Wilmington, DE 19803
Event Date: 2/27/2015, 10:00AM – 2:00PM
Description: This event is designed to encourage Delaware health science students to become involved in research and the medical field – to educate the next generation of health care professionals. Students will partner with researchers, clinicians, healthcare professionals, patients and families, to learn about and define a rare disease and the health care needs in the community. Health Occupations Students of America (HOSA) is a national student organization that provides a unique program of leadership development, motivation, and recognition exclusively for secondary, post secondary, collegiate, and adult students enrolled in health science education. Eight teams (two students per team) will develop a visual display of a specific rare disease with a proposed cure/treatment or way to improve quality-of-life issues related to their chosen rare disease. A select panel of Nemours Associates will judge the HOSA students’ competitive entries and awards will be presented.

District of Columbia

If you would like to help us organize an advocacy event in this state, sign-up here.

Event: NORD’s Celebration of Rare Disease Day with a Special Preview of New Documentary “Banner on the Moon”
Organization: National Organization for Rare Disorders (NORD)
Event Address: National Press Club, 529 14th Street, NW, 13th Floor, Washington, D.C. 20045
Event Date: Thursday, February 26, 2015
RSVP HERE
Description: About the Documentary: After being diagnosed with a rare disease, Cindy Abbott challenges herself to become the first woman to summit Mount Everest and complete the 1,000-mile Alaskan Iditarod. As part of the quest to raise awareness, she documents her journey and carries a special banner along the way. The result is a story of tenacity and hope. “Banner on the Moon” follows Cindy from the beginning, as she and her family seek the cause for her many alarming and debilitating symptoms, to her diagnosis at the age of 48, after 14 excruciating years of doctors and tests. After being told she has a life-threatening illness called Wegener’s granulomatosis, she is determined to continue living life to the fullest and sets out on a remarkable journey, challenging herself to overcome one difficult feat after another. An emotional and inspiring feature-length documentary film narrated by Gold Globe® & 4-time Emmy® Award Winner Valerie Harper. This special preview is sponsored by NORD® for its partners in the rare disease community in celebration of Rare Disease Day 2015. Since 1983, NORD has been improving the lives of all people affected by rare diseases and those seeking to help them with programs of education, advocacy, research and patient/family services. Join us online at rarediseases.org and on Twitter @rarediseases and @RareDayUS.

Rare Disease Events on Capitol Hill

Organization: Rare Disease Legislative Advocates
Contact Name: Andy Russell
Email: arussell@everylifefoundation.org
Event Address: First Street SE, Washington, DC 20515
Event Date: 2/23/2015 – 2/27/2015
Description: Join RDLA and more than 200 rare disease patient advocates for events in DC dedicated to empowering patients, families and friends to become legislative advocates. You will have the opportunity to meet with your Members of Congress, network with government leaders and learn best practices for successful advocacy. You must be registered, however there is NO cost to attend any of the events and there are travel scholarships available.

Event Date: Monday, Feb. 23, 2015
Event Name: Rare Disease Documentary Screening and Cocktail Reception @ Carnegie Institution for Science
Event Address: 1530 P St. NW, Washington, DC 20005
Event Time: 5:30 pm Cocktail Reception
Event Time: 7:00 pm Documentary Screening featuring the film “RARE”
rarefilm.org
Event Time: 8:30 pm Panel Discussion
To register for this event ONLY, Click HERE

Event Date: Tuesday, Feb. 24, 2015
Event Name: Legislative Conference @ FHI 360
Event Address: 1825 Connecticut Ave. NW, 8th Floor, Washington, DC 20009
Event Time: 8:15 am – 9:00 am Registration and Breakfast
Event Time: 9:00 am – 5:00 pm Legislative Conference
Click here to see the 2015 Legislative Conference Agenda

Event Date: Wednesday, Feb. 25, 2015
Event Name: Lobby Day Breakfast @ Women’s Democratic Club
Event Address: 1526 NewHampshire Ave. NW, Washington, DC 20036
Event Time: 7:00 am – 8:30 am

Event Name: Rare Disease Lobby Day @ U.S. Senate and House Office Buildings
Event Time: 9:00 am – 5:00 pm Meetings with your Elected Officials

Event Date: Thursday, Feb. 26, 2015
Event Name: Rare Disease Congressional Caucus Briefing @ U.S. Capitol Visitor Center
Event Time: 12:00 pm – 1:00 pm
To register for this event ONLY, Click HERE

Event Name: Rare Artist Reception Rayburn Foyer
Event Time: 5:00 pm – 7:00 pm
To register for this event ONLY, Click HERE

Event Date: Friday, Feb. 27, 2015
Event Name: Rare Disease Day at the NIH @ NIH Campus
Event Address: 9000 Rockville Pike, Bethesda, Maryland 20892
Event Time: 8:30 pm – 5:00 pm
*To register for this event ONLY, Click HERE
**Registration done separately from Rare Disease Events on Capitol Hill

Florida

Florida Rare Disease Day State House Event
Thursday, February 19, 2015
State Capitol Building
400 South Monroe Street, Tallahassee, FL 32399
9:00am-11:00am
If you would like register for this event, sign-up here.

Event: Walk Against Rare Diseases
Organization: Guardian Hands Foundation
Contact Name: Grace Loeb
Email: grace.loeb@gmail.com
Phone: 305-321-6961
Event Address: Westland Gardens Park, 13501 N.W. 107th Avenue, Hialeah Gardens, Florida 33018
Event Date: 2/28/2015 (7:00 AM – 11:30 AM)
Description: Join us for the 2nd Annual Walk Against Rare Diseases. Walk to raise awareness and to make a difference in the life of those affected by rare diseases.

Event: Rare Disease Day Jacksonville 2015
Organization: Rare Disease Day Jacksonville
Contact Name: Cynthia Gist
Email: clgistpsalm91@yahoo.com
Phone: 904-477-6020
Event Address: South Mandarin Regional Library, 12125 San Jose Blvd., Jacksonville, Florida 32223
Event Date: 2/28/2015
Description: Rare Disease Day Jacksonville 2015 will be held in the South Mandarin Regional Library from 3:30pm – 5:00pm and will include a display featuring information regarding rare diseases, their impact, and the goals of Rare Disease Day. The focus is to raise awareness regarding rare diseases in the community and to provide advocacy. Those who suffer a rare disease are encouraged to prepare a poster board featuring the disease to display during the event.

Georgia

PROCLAMATION: Congratulations to Georgia advocates for receiving a proclamation by Governor Nathan Deal declaring February 28, 2015 as Rare Disease Day in Georgia. View the proclamation here.

Georgia Rare Disease Day State House Event
Friday February 27, 2015
State Capitol Building, South Wing
206 Washington Street Southwest, Atlanta, GA 30334
12:30pm-2:30pm
If you would like to register for this event, sign-up here.

Event: Hope Flies Throwback Thursday
Organization: Foundation for Mitochondrial Disease
Contact Name: Morgan Smith
Email: msmith@mitochondrialdiseases.org
Event Address: 3771 Roswell Road, Atlanta, Georgia 30342
Event Date: 2/26/2015
Description: Join the Foundation for Mitochondrial Medicine for Hope Flies Throwback Thursday on February 26th to Raise Awareness for Rare Disease Day. Dust off your platform shoes and your bell bottom jeans for Hope Flies Throwback Thursday – a fun evening dancing to the hits of the 70s. The event will be held from 7pm – 10pm at Atlanta’s original “throwback” – Johnny’s Hideaway, 3771 Roswell Road. The event is being held to help raise awareness of mitochondrial disease and will feature dancing and fashions from the 70s.
Tickets are $40 per person or $75 per couple and include beer & wine. All proceeds benefit the Foundation for Mitochondrial Disease.

Hawaii

If you would like to help us organize an advocacy event in this state, sign-up here.

Idaho

An information table and exhibit is being planned at the Idaho state capitol building on Friday, February 27, 2015, for more information, sign-up here.

Illinois

If you would like to help us organize an advocacy event in this state, sign-up here.

Event: Rock Rare Disease
Organization: Harmony 4 Hope
Email: info@harmony4hope.org
Event Address: Chicago, Illinois
Event Date: 2/27/2015
Description: Throughout the year, Harmony 4 Hope offers opportunities for community to get involved in turning up the volume for rare disease with us. Schools, churches, youth groups, non profits & businesses, both small & large, have participated in our signature Play This Forward Collection Drive. These drives are implemented for the purpose of gathering older iPods to deliver music to sick children. Through our Rare Disease Rockstars Initiative, we further engage community in this cause by inviting the public to leave upbeat & inspirational song requests. We create an annual playlist based upon requests that we receive. We then identify hospitals interested in being the recipient of our gift of music on the technology that we re-purpose. The devices are delivered to children in at our annual Rare Disease Day event. Ours is an effective & collaborative effort that is heightening awareness, engaging community & serving children, on both the giving and receiving ends.

This year with the engagement of biopharmaceutical companies such as, Retrophin & non profit organizations like Chicago’s Sharing Notes, we have collected dozens of iPods that are being loaded with music by our youth volunteers & gifted to Seattle Children’s Hospital & La Rabida Children’s Hospital, Chicago, in recognition of Rare Disease Day 2015. We are filled with HOPE & ENERGY as we witness our vision come to life! We are committed to creating community & supporting scientific discoveries in rare disease through the power of music.

Event: Rare Gems for Rare Diseases
Organization: Lindsey Garcia/Dempster Family Foundation
Email: pookiehanaa@gmail.com
Event Address: 2415 W North Avenue, Chicago, Illinois
Date: 2/28/2015
Description: This event to honor and raise awareness for Rare Disease Day 2015 will be a jewelry pop up at a coffee shop. Cup & Spoon customers will be able to purchase coffee as well as jewelry. Ten percent of the proceeds will be donated to the Dempster Family Foundation. The Dempster Family Foundation primarily focuses on raising awareness for the rare genetic disorder 22Q deletion syndrome. For more information, visit the Facebook page.

Indiana

If you would like to help us organize an advocacy event in this state, sign-up here.

Event: Rare Disease Day Celebration
Organization: Boler Parseghian Center for Rare and Neglected Diseases
Contact Name: Barbara Calhoun
Email: bcalhoun@nd.edu
Event Address: University of Notre Dame McKenna Hall, Notre Dame Avenue, Notre Dame, Indiana 46556
Event Date: 2/13/2015 – 2/14/2015
Description: The Boler Parseghian Center for Rare and Neglected Diseases at the University of Notre Dame will have Rare Disease Day celebrations on Feb. 13th and Feb. 14th, 2015. Friday’s event will be video live streamed and have Notre Dame Researchers presenting a brief summary of their rare disease research and findings. Ebola, NonKetotic Hyperglycinemia, Niemann PickType C and other rare and neglected disease research will be presented. Saturday will be a Rare Disease Day celebration! We welcome everyone and our event will include presentations and discussion panels on a variety of rare disease topics – the focus of this event is on the clinician, caregiver, patient and family perspectives.

Iowa

If you would like to help us organize an advocacy event in this state, sign-up here.

Kansas

PROCLAMATION: Congratulations to Kansas advocates for receiving a proclamation by Governor Sam Brownback declaring February 28, 2015 as Rare Disease Day in Kansas. View the proclamation here.

An information table and exhibit is being planned at the Kansas state capitol building, date is still being determined, for more information, sign-up here.

Event: Journey for Jo 5K Run/Walk & Kids Dash
Organization: Jo Bryant Memorial Foundation
Email: info@journeyforjo.com
Event Address: Lake Shawnee in Topeka, Kansas
Event Date: 5/30/2015
Description: The Jo Bryant Memorial Foundation, a non-profit organization, was formed in memory of Jo Bryant to provide awareness and fundraising for research of cholangiocarcinoma (cancer of the bile ducts) while supporting patients and caregivers. Jo Bryant was an active, healthy member of the Topeka, Kansas community and teacher for 43 years who was suddenly and unexpectedly diagnosed with it. Her battle lasted less than one month. Our signature event, Journey for Jo 5K Run/Walk and Kids Dash, will be on Saturday, May 30, 2015 at Lake Shawnee in Topeka, Kansas. This will be our 3rd annual event. Our family friendly event attracts participants ranging from serious runners to others that just want to support the cause and remember Jo.

Following the race, there will be several kids’ activities and sponsor set up activities and/or tables, along with snacks. All volunteers and participants are eligible to win giveaways that have been donated. For the latest details, please visit and like our Facebook page: www.facebook.com/JourneyforJo and visit our website at www.journeyforjo.com.

Kentucky

If you would like to help us organize an advocacy event in this state, sign-up here.

Louisiana

If you would like to help us organize an advocacy event in this state, sign-up here.

PROCLAMATION: Congratulations to Louisiana rare disease advocates for receiving a proclamation from Governor Bobby Jindal officially declaring February 28, 2015 as Rare Disease Day in the state of Louisiana. View the proclamation here.

Maine

If you would like to help us organize an advocacy event in this state, sign-up here.

Maryland

If you would like to help us organize an advocacy event in this state, sign-up here.

PROCLAMATION: Congratulations to Maryland advocates for receiving a proclamation by Governor Larry Hogan declaring February 28, 2015 as Rare Disease Day in their state. View the proclamation here.

Massachusetts

Massachusetts Rare Disease Day State House Event
Date: Monday, February 23, 2015
Time 11:00 AM to 12:00 PM (EST)
Location: Massachusetts State House
24 Beacon Street
Great Hall
Boston, MA 01233
Pre-registration for this free event is requested, but not required: sign-up here.

Michigan

PROCLAMATION: Congratulations to the rare disease advocates in Michigan. Governor Rick Snyder signed a proclamation declaring February 28, 2015 as Rare Disease Day in their state. View the proclamation here.

Michigan Rare Disease Day State House Event
Thursday, February 26, 2015
State Capitol Building
Capitol Avenue at Michigan Avenue, Lansing, MI 48933
11:00am-12:00pm
To register for this event, sign-up here.

Event: Rare Disease Day Mystery Dinner
Organization: WAGR Warriors
Contact Name: Lindsay Kandow
Email: wagrwarriors@gmail.com
Event Address: MacRay Harbor, 30675 North River Road, Michigan Harrison Township, Michigan
Event Date: 2/28/15
Description: In celebration of Rare Disease Day, the WAGR Warriors is hosting a Mystery Dinner to support and raise awareness of rare diseases like WAGR/11p deletion syndrome. The Mystery Dinner will be at MacRay Harbor in Harrison Township.

Minnesota

PROCLAMATION: Congratulations to the rare disease advocates in Minnesota. Governor Mark Dayton signed a proclamation declaring February 28, 2015 as Rare Disease Day in their state. View the proclamation here.

Minnesota State House Event
Tuesday, February 24, 2015

State Office Building
Room 400 North
100 Rev. Dr. Martin Luther King Jr. Blvd.
St. Paul, MN 55155
10:30am-12:00pm
If you would like register for this event, sign-up here.

Event: Advancing the Management of Rare Diseases: From Genes to Neurocognitive Function
Organization: University of Minnesota
Contact Name: Reena Kartha
Email: rvkartha@umn.edu
Event Address: 1-110, McGuire Translational Research Institute, 2001 6th St.SE, Minneapolis, Minnesota 55455
Event Date: 2/26/2015
Description: The University of Minnesota Stem Cell Institute and the Center for Orphan Drug Research are organizing a conference in conjunction with Rare Disease Day. Our program will feature three presentations from University of Minnesota faculty engaged in innovative research related to treatment or management of rare disorders followed by a panel discussion. For more details, click here.

Mississippi

If you would like to help us organize an advocacy event in this state, sign-up here.

Missouri

PROCLAMATION: Congratulations to the rare disease advocates in Missouri. Governor Jeremiah W. Nixon signed a proclamation declaring February 28, 2015 as Rare Disease Day in their state. View the proclamation here.

Missouri Rare Disease Day State House Event
Wednesday, February 18, 2015
State Capitol Building
201 West Capitol Avenue, Jefferson City, MO 65101
Time: 9am-11am
If you would like to register for this event, sign-up here.

Event: Awareness for Wolfram syndrome
Organization: The Jack and J.T. Snow Foundation
Contact Name: Amber Bieser
Email: amberbzr@gmail.com
Event Address: 7700 Fine Road, Saint Louis, Missouri 63129
Event Date: 2/23 – 2/27/2015
Description: During the week of February 23-27, Rogers Elementary School in St. Louis, MO will be raising money and awareness for Wolfram syndrome.

Event: Rare Disease Day Movie: Blindsided
Organization: Genetics Area Program, University of Missouri, Columbia
Contact Name: Linh Ngo
Email: ltn887@mail.missouri.edu
Event Address: Leadership Auditorium, Student Center 901 Rollins Road, University of Missouri, Columbia, Missouri 65201
Event Date: 2/28/2015
Description: Blindsided is the award-winning documentary that captures the turmoil a family experiences after discovering their 11-year old son, Jared Hara, is going blind. Jared was diagnosed with Leber’s hereditary optic neuropathy, one of the several thousands of rare diseases that affect 25 million people in the United States alone. Join us to watch the Hara’s journey on this year’s Rare Disease Day, February 28, 2015.

Montana

If you would like to help us organize an advocacy event in this state, sign-up here.

Nebraska

Nebraska Rare Disease Day State House Event
Monday, February 23, 2015
State Capitol Building
1445 K Street, Lincoln, NE 68508
12:00pm-1:00pm
If you would like register for this event, sign-up here.

Nevada

PROCLAMATION: Congratulations to the rare disease advocates in Nevada. Governor Brian Sandoval signed a proclamation declaring February 28, 2015 as Rare Disease Day in Nevada. View the proclamation here.

An information table and exhibit is being planned at the Nevada state capitol building on February 27, 2015 from 10:00am-3:00pm at the Legislative Building Front Foyer. For more information sign-up here.

New Hampshire

An information table and exhibit is being planned at the New Hampshire state capitol building on Friday, February 27, 2015 at 9:00am. For more information , sign-up here.

New Jersey

PROCLAMATION: On January 29, New Jersey Assemblyman Herb Conaway passed a bill to designate the last day of February every year as Rare Disease Awareness Day. View photo of Julie Raskin with Assembly Conaway here.

New Jersey Rare Disease Day State House Event
Monday, March 16, 2015
New Jersey State House
Room 14, Annex Building
at 12:00pm
Networking from 9:30am-4:00pm Continental Breakfast & Lunch will be served
If you would like to register this event, sign-up here.

The New Jersey Rare Disease Alliance is an alliance of individuals and organizations dedicated to improving the lives of the 800,000 NJ rare disease patients through awareness, advocacy & research. To bring recognition to the issues rare disease patients face and the role of government and industry in addressing the needs of rare disease patients, the New Jersey Rare Disease Alliance will host events at the New Jersey State House on March 16 in Room 14 of the Annex Building. The event is supported by NORD (National Organization for Rare Disorders) and BioNJ and is planned to coincide with Rare Disease Day events planned all over the world.  The theme of Rare Disease Day this year is “Day by Day, Hand in Hand.”

The New Jersey event will include an opportunity to network with others in the rare disease community from 9:30-4:00. An hour-long program at 12:00 noon will focus on the “Rare Disease Paradox: Patients are Common, Treatments are Not.” The program will be moderated by rare disease patient advocate Bill Cummings. Confirmed speakers include Assemblyman Herb Conaway, Chair of the Health and Senior Services Committee of the New Jersey Legislative Assembly, and Diane Dorman, Vice President of Public Policy at the National Organization of Rare Disorders.

Leaders from the Rare Disease community will share stories of what it is like to live with a rare disease in 2015, the great unmet need that exists in this community, the importance of advocacy on the federal and state level, and the promise of new treatments and increased access to care.

The New Jersey Rare Disease Alliance is also organizing “Facetime with Your Legislator.” Room 14 will be available on March 16 before and after the noon event for patients and families to meet with the legislators in their home districts.

In addition, attendees will have the opportunity to tell their stories and be videotaped by Rare Disease Report. Their weekly newsletter goes out to 50,000 clinicians, patients, advocates, investors, and scientists who are interested in rare diseases.

Continental breakfast and lunch will be served.

For more information visit www.njrarediseasealliance.org

Event: Crate Expectations
Organization: Autoinflammatory Alliance
Contact Name: Carla Herbert
Email: planterofhope01@yahoo.com
Event Address: 322 Somerset Street, Gloucester City, New Jersey 08030
Event Date: 2/9/2015
Description: The Autoinflammatory Alliance is pleased to announce a new program for children with autoinflammatory diseases. Crate Expectations is a care package program in which we support our community members by sending unique care packages that will contain items intended to uplift and encourage. Items will vary but may include activities/crafts, lip balms/chapstick, hats and gloves, and a few other feel good items. For more information, please use the contact form located here.

Event: Rare Disease Awareness Weekend
Organization: Rare Disease United Foundation
Contact Name: Nadia Bodkin
Email: nadiabodkin@edsers.org
Event Address: RWJ Health & Wellness Center, 3100 Quakerbridge Road, Hamilton, New Jersey 08619
Event Date: 2/21/2015
Description: Rare disease patient advocacy organizations and the community will unite for a weekend of Rare Disease Awareness. In addition to a variety of organizations providing services and programs to the community, there will be a host of vendors selling the latest products and services centered around improving health, wellness, and overall happiness. This event is open to the general public and you don’t need to have a rare condition to participate. We are anticipating a minimum of 850 people each day. Save the date and bring the family to the RWJ Health and Wellness Center Feb. 21st and 22nd. All kids will have an opportunity to take pictures with our zebra volunteer and will be entered into a raffle to take their very own zebra home.
If you are a group or organization interested in tabling at this event, please email Nadia Bodkin by Feb. 13th in order to reserve a 6-foot table, free of charge.

Event: PCTI Cares Brought by the CLS Class of 2015
Organization: Passaic County Technical Institute
Contact Name: Nicole Shema
Email: nshema@pcti.tec.nj.us
Event Address: Passaic County Technical Institute, 45 Reinhardt Road, Wayne, New Jersey 07470
Event Date: 2/27/2015
Description: It is not every day that you see a group of students dedicate themselves to a noble cause. Passaic County Technical Institute was home to such a caring group of adolescents. The CLS Project Advance class under the direction of J. Johnson and N. Shema decided to raise awareness for Rare Disease Day. While raising awareness and donations for a student jeans day, the students were able to create a beautiful hand mural to add to the Handprints Across America Gallery. It is expected that this charity event will become a legacy passed down from the CLS class of 2015 to all upcoming CLS classes and the event will grow year after year.

New Mexico

An information table and exhibit is being planned at the New Mexico state capitol building on March 2, 2015. For additional information, sign-up here.

PROCLAMATION: Congratulations to the rare disease advocates in New Mexico. Governor Susana Martinez signed a proclamation declaring February 28, 2015 as Rare Disease Day in their state. View the proclamation and rare disease advocate, Gabbi here.

New York

PROCLAMATION: Congratulations to New York advocates for receiving the State of New York Legislative Resolution to memorialize Governor Andrew M. Cuomo to proclaim February 28, 2015 as Rare Disease Day in the State of New York. View the proclamation here.

New York Rare Disease Day State House Event
Tuesday, March 3, 2015
EMPIRE STATE CONVENTION CENTER
Meeting Room 4 North Concourse
South Mall Arterial, Albany, NY 12242
10am-12pm
If you would like register for this event, sign-up here.

Event: Painting for a Cause
Organization: Orphan Drug Solutions
Contact Name: Lisa Skrezec
Email: LisaS@orphandrugsolutions.com
Event Address: 721 Hawkins Avenue, Lake Ronkonkoma, New York 11779
Event Date: 2/28/2015
Description: We will be hosting our inaugural “Painting for a Cause” event at the Crazy Crepe Cafe. The $45 ticket includes everything you will need for the event. The Paint Nite artist will instruct us every step of the way, so all artistic levels are welcome. All proceeds from tickets and raffles will be donated to Cullen’s Crusaders Against ALS, a Long Island based ALS non profit organization. There will be a 50/50 raffle and everything from skydiving vouchers, wine tasting baskets, indoor trampoline passes, to gluten-free truffles. Buy tickets here.

Event: Rare Disease Day: Lysosomal Storage Disorders
Organization: RFK IDDRC at the Albert Einstein College of Medicine
Contact Name: Lisa Guillory
Email: lisa.guillory@einstein.yu.edu
Event Address: Price Center, LeFrak Auditorium, 1301 Morris Park Avenue, Bronx, New York 10461-0000
Event Date: 3/2/2015
Description: For the past three years, the Albert Einstein College of Medicine’s Intellectual and Developmental Disabilities Research Center (IDDRC) has celebrated Rare Disease Day and this year is no exception. However, this year we have chosen to focus on Lysosomal Storage Disorders. We will begin the day with a panel discussion and interview of patients and parents contending with this group of rare disorders. The interviews will be conducted by Einstein and Montefiore Hospital doctors and scientists and the day will conclude with piano and singing performances by affected individuals. We will also feature works of art from Genzyme’s Expressions of Hope exhibit and photographs of LSD individuals from Levi Gershkowitz’s collection. The event is free and open to the public – RSVP not necessary.

North Carolina

PROCLAMATION: Congratulations to North Carolina rare disease advocates for receiving a proclamation from Governor Pat McCrory officially declaring February 28, 2015 as Rare Disease Day in North Carolina. View the proclamation here.

Event: Rare Disease Awareness Event
Organization: Supporting Families with Koolen-deVries Syndrome
Contact Name: Nina Verin
Email: ninaverin@gmail.com
Event Address: 128 Fearrington Post, Pittsboro, North Carolina 27312
Event Date: 2/28/2015
Description: A community will come together to share resources on the over 7,000 rare conditions that affect 1 out of 10 people in the US. Activities include: resource table with families, doctors, and other community partners, photography sessions with the Rare Disease Day logo, children’s art activities using hand prints, spare change drive, refreshments and raffle with prizes.

Event: Raise and Join Hands OBX!
Organization: Alliance for Cryoglobulinemia
Contact Name: Darlene Ulmet
Email: DarleneRUlmet@gmail.com
Event Address: OBX MD Milepost 2.5, 4721 North Croatan Highway, Kitty Hawk, North Carolina 27949
Event Date: 2/28/2015
Description: RAISE AND JOIN HANDS to show your solidarity with rare disease patients around the world including those right here at home on the Outer Banks of North Carolina!

North Dakota

If you would like to help us organize an advocacy event in this state, sign-up here.

Ohio

Ohio Rare Disease Day State House Event
Wednesday, February 18, 2015
State Capitol Building
1 Capitol Square, Columbus, Ohio 43215
7am-9am in the Museum Gallery
If you would like to register for this event, sign-up here.

Oklahoma

PROCLAMATION: Congratulations to Oklahoma rare disease advocates for receiving a proclamation from Governor Mary Fallin officially declaring February 23, 2015 as Rare Disease Day in their state. View the proclamation here.

Oklahoma Rare Disease Day State House Event
Monday, February 23, 2015
State Capitol Building
2300 North Lincoln Boulevard, Oklahoma City, OK
10:00am-12:00pm
If you would like to register for this event, sign-up here.

Oregon

Oregon Rare Disease Day State House Event is currently being planned in Oregon. If you would like to collaborate on the planning of this event, sign-up here.

Pennsylvania

PROCLAMATION: Congratulations to Pennsylvania advocates for receiving a proclamation from Governor Tom Wolf recognizing February 28, 2015 as Rare Disease Day. View the proclamation here.

Pennsylvania Rare Disease Day State House Event
Tuesday, February 24, 2015
State Capitol Building
North 3rd Street, Harrisburg, PA 17120
11:30am-1:30pm
If you would like register for this event, sign-up here.

Event: Fundraiser Dinner at Texas Roadhouse
Organization: Garrett the Grand – Batten Fighter
Email: GarrettTheGrand@gmail.com
Event Address: 70 Buckwalter Road, Royersford, Pennsylvania
Event Date: 3/12/2015
Facebook: www.facebook.com/garrettthegrand
Description: Garrett the Grand – Batten Fighter is hosting a fundraiser night at Texas Roadhouse Restaurant in Royersford, PA, Thursday, March 12th from 4pm-10pm. Twelve percent of each check will be donated to Garrett the Grand – Batten Fighter, a non profit organization raising awareness and funds for Batten disease. Batten disease or neuronal ceroid lipofuscinoses (NCL) is a rare, fatal genetic disease. It is a progressive neurological disease, which causes seizures, blindness and changes a normal child into a bedridden helpless child. There is no cure and no treatment. Garrett the Grand and his family hope to see you there.

Event: Million Dollar Bike Ride
Organization: The Orphan Disease Center, University of Pennsylvania
Contact Name: Samantha Charleston
Email: scharle@mail.med.upenn.edu
Event Address: 125 S. 31st Street, Philadelphia, Pennsylvania 19104
Event Date: 5/9/2015
Description: The 2nd Annual Million Dollar Bike Ride (MDBR) takes place on Saturday, May 9, 2015, beginning and ending in Philadelphia. We expect over 600 cyclists who will ride 12, 35, or 75 miles, and hope to beat last year’s $1.4 million raised for rare disease research. The ride starts at 8:00am on Penn’s Campus at Highline Park (31st and Chestnut), with refreshments and entertainment at the start/finish line. One hundred percent of the funds raised through the MDBR will go towards pilot grants to support research for participating rare diseases, such as MPS, ML4, Pitt Hopkins, LAM, Cystic Fibrosis, Castleman Disease, and more.

Disease teams are formed to represent these various diseases, and are tasked with raising enough money to qualify for matching grants from the Orphan Disease Center (ODC) which are ultimately used to fund research. The ODC is securing philanthropic and corporate donations that will be used to match dollar-for-dollar money raised by the cycling participants. Following the event, an RFA will be broadly distributed to the international scientific community requesting pilot grant applications to study diseases for which the designated money has been raised. Scientific leadership of the ODC and its extramural advisors will review the applications and make awards to those of the highest scientific merit which address the specific topics outlined in the RFA. The ODC will disperse the money to grantees and manage progress of the science and spending on the award.

Rhode Island

If you would like to help us organize an advocacy event in this state, sign-up here.

Event: Beyond the Diagnosis Art Exhibit
Organization: Rare Disease United Foundation
Contact Name: Patricia Weltin
Email: PWeltin@rarediseaseunited.org
Event Address: 222 Richmond Street, Providence, Rhode Island 02903
Event Date: 2/18/2015
Description: The Beyond the Diagnosis Art Exhibit’s focus is the rare disease patient. Artists have donated their time and talents to paint rare disease patients for this groundbreaking exhibit. The exhibit will be up at Brown University’s Alpert Medical School for the entire month of February. The exhibit is open to the public during regular business hours. Alpert Medical School is located at 222 Richmond Street, Providence, Rhode Island, 02903.

South Carolina

South Carolina Rare Disease Day State House Event
Thursday, February 26, 2015
State Capitol Building
1100 Gervais Street, Columbia, SC 29201
Rotunda
Time: 10am-11:30am
If you would like to register for this event, sign-up here.

South Dakota

An information table and exhibit is being planned at the South Dakota state capitol building on Monday, March 9, 2015. For additional information, sign-up here.

Event: 5th Annual Sanford Rare Disease Symposium
Organization: Sanford Research
Contact Name: Catie Olson
Email: Catherine.Olson@sanfordhealth.org
Event Address: Sanford Center, Dakota Room, 2301 E 60th Street North Sioux Falls, South Dakota, 57104
Event Date: 2/27/2015
Description: Sanford Research is hosting its 5th Annual Sanford Rare Disease Symposium. Register here.

Tennessee

PROCLAMATION: Congratulations to Tennessee rare disease advocates for receiving a proclamation from Governor Bill Haslam officially declaring February 28, 2015 as Rare Disease Awareness Day. View the proclamation here.

Tennessee Rare Disease Day State House Event
Monday, February 23, 2015
State Capitol Building
600 Charlotte Avenue, Nashville, TN 37243
3:00pm-4:30pm
To register for this event, sign-up here.

Texas

Texas Rare Disease Day State House Event
Saturday, February 28, 2015
State Capitol Building
1100 Congress Avenue, Austin, Texas
1:00pm-3:00pm
If you would like to register for this event, sign-up here.

The Sugar Shindig
Organization: Congenital Hyperinsulinism International
Contact Name: Julie Raskin
Email: jraskin@congenitalhi.org
Event Address: The Lone Star Court Hotel, 10901 Domain Drive, Austin, Texas 78758
Event Date: 2/28/2015
Description: Congenital Hyperinsulinism International will be holding the inaugural Sugar Shindig in support of patients living with congenital hyperinsulinism (HI). The CHI Sugar Shindig will emphasize the importance of patient families, academic centers, physicians, and members of the health care industry working toward a bright future for children and adults living with HI. Subjects of the event will cover the challenges of living with this rare condition, progress toward the development of better treatments, and support initiatives for patients and their families. Dr. Paul Thornton, Director of the Hyperinsulinism Center at Cook Children’s Medical Center and one of the world’s leaders in HI research and clinical work, will headline the evening with a talk on this condition. To make a donation or purchase tickets, click here.

Event: Fundraising Craft Fair
Organization: North Texas Angels Pageant
Contact Name: Staci Newton/Carmie Kendrick
Email: northtexasangels@gmail.com
Event Address: Buttons Memorial United Methodist Church, 101 West Eldorado Pkwy, Little Elm, Texas 75068
Event Date: 2/28/2015
Description: The North Texas Angels pageant is a non-profit organization that hosts a free, open, non-competitive pageant for those with rare diseases, life threatening illnesses, and/or medically diagnosed intellectual, physical, or emotions disabilities. The organization will host a fundraising craft fair on Rare Disease Day. Everyone is asked to wear jeans and the first 100 people will receive a “gene” ribbon and information card. There will be literature from several rare disease foundations. Come out and support this community awareness event in North Texas!

Event: The Rundown for Rare Disease
Organization: U.R. Our Hope
Email: vanessa@urourhope.org
Event Address: 9600 S IH 35, Austin, Texas
Date: 2/28/2015
Description: Join us for Rare Disease Day from noon to 4pm at Third Base in Southpark Meadows for an afternoon of fun and awareness! Our good friend, DJ Versus will keep us dancing and he’s bringing some special guests to perform as well. We will also have a variety of family friendly activities. Light refreshments will be provided. You will be able to order food from Third Base, entry is free, but we will be accepting donations for U.R. Our Hope. We will have a raffle drawing for some amazing prizes including a Texas Stars Hockey Prize Pack, tickets for a Texas state baseball game, and gift cards to your favorite restaurants.

Utah

PROCLAMATION: Congratulations to Utah rare disease advocates for receiving a proclamation from Governor Gary Herbert urging the people of the state of Utah to join in observing February 28, 2015 as Rare Disease Day in their state. View the proclamation here.

Utah Rare Disease Day State House Event
Friday, February 27, 2015
State Capitol Building
350 North State Street, Salt Lake City, UT 84114
3:00pm-5:00pm
If you would like to register for this event, sign-up here.

Utah Rare Disease Day Symposium
Utah Rare
Saturday, February 28, 2015
from 12:00 PM to 5:00 PM (MST)
Salt Lake City, UT
sign-up here.

Event: Run4Rare Press Conference
Organization: Utah Rare & Run4Rare
Contact Name: Cristina Might
Email: anne@utahrare.org
Event Address: Primary Children’s Outpatient Center Salt Lake City, Utah
Event Date: 2/18/2015
Description: Press conference recognizing Noah Coughlin’s transcontinental run in honor of rare disease.

Event: Utah Jazz Game – Rare National Anthem
Organization: Utah Jazz & Run4Rare
Contact Name: Cristina Might
Email: gina@utahrare.org
Event Address: Energy Solutions Arena, Salt Lake City, Utah
Event Date: 2/23/2015
Description: A group of rare children will be on court in recognition of Rare Disease Day in Utah.

Event: Rare Angels Photo Exhibit
Organization: Utah Rare & Aware of Angels
Contact Name: Cristina Might
Email: cristina@utahrare.org
Event Address: Utah State Capitol
Event Date: 2/27/2015
Description A photography exhibit by artist Season Atwater showcasing children and families with rare diseases from Utah.

Vermont

If you would like to help us organize an advocacy event in this state, sign-up here.

PROCLAMATION: Congratulations to Vermont rare disease advocates for receiving a proclamation from Governor Peter Shumlin declaring February 28, 2015 as Rare Disease Awareness Day in their state. View the proclamation here.

Virginia

Virginia Rare Disease Day State House Event
Wednesday, February 25, 2015
Virginia State Capitol Building
1000 Bank Street, Richmond, VA 23219-3673
9:30am-11:30am
If you would like to register for this event, sign-up here.

Washington

PROCLAMATION: Congratulations to Washington rare disease advocates for receiving a proclamation from Governor Jay Inslee urging the people of the state of Washington to join in observing February 28, 2015 as Rare Disease Day. View the proclamation here.

Washington State Rare Disease Day State House Event
Wednesday, February 25, 2015
The Cherberg Building,
304 15th Avenue, SW,
Olympia, WA 98501
3:00pm-5:00pm
To register for this event, sign-up here.

West Virginia

If you would like to help us organize an advocacy event in this state, sign-up here.

Event: Chili Cook Off/Rare Disease Day Awareness
Organization: SOIMA (Internal Medicine Club) of West Virginia School of Osteopathic Medicine
Contact Name: Onyinyechukwu Okorji
Email: ookorjiaosteo.wvsom.edu
Event Address: 400 North Lee Street, Lewisburg, West Virginia 24901
Event Date: 2/26/2015
Description: The Internal Medicine Club of West Virginia School of Osteopathic will be hosting a Chili Cook Off along with a special presentation by one of our medical students, Kyle Diller. Mr. Diller will be presenting on the rare disease, CDKL5. Other activities will include handprints with signatures of those who donate. Also we will take pictures and send them to NORD.

Wisconsin

PROCLAMATION: Congratulations to the Wisconsin rare disease advocates for receiving a proclamation by Governor Scott Walker declaring Friday, February 27, 2015 as Rare Disease Day throughout the state of Wisconsin. View the proclamation here.

Rare Disease Day at Wisconsin State House
Friday, February 27, 2015
2 East Main Street, Madison, WI 53703
8:00am-12:00pm
If you would like to register for this event, sign-up here.

Event: Marquette Dance Marathon
Organization: Marquette Dance Marathon, Marquette University
Contact Name: Nicole Ingram
Email: marcdaniloff@gmail.com
Event Address: Marquette Union Sports Annex, 729 N. 16th Street, Milwaukee, Wisconsin
Event Date: 2/28/2015
Description: The Annual Marquette Dance Marathon is attended by supporters and Children’s Champions who are battling or have survived a rare disease. The money raised benefits Children’s Hospital of Wisconsin. Marquette University’s Dance Marathon supports the famous slogan, “We Stand for Those Who Can’t,” where students will stand for 8 hours as an act of solidarity for the children treated by the hospitals in the Children’s Miracle Network. This year’s dance marathon falls on Rare Disease Day and Audra Daniloff will be telling her story of overcoming hemophagocytic lymphohistocytosis (HLH) over the last two years. She will be joined by other Children’s Champions sharing the stories during the event.

Wyoming

If you would like to help us organize an advocacy event in this state, sign-up here.