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Alabama

Alabama Rare Disease Day Events

Alabama State House
11 South Union Street
Montgomery, Alabama

March 01, 2017 All Day

 

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

8 am – 11 am 6th Floor Lobby of Alabama State House
Meet and Greet with Legislators (or staff), industry professionals, and Rare Disease patients/caregivers.

11 am – 12:30 pm Location TBD Lunch with Event attendees

1 pm – 3 pm Rm. 609 of Alabama State House
Share patient/caregiver stories and meet with individual legislators in their offices

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Alabama. Register on the Rare Action Network website here.

4th Annual Rare Disease Genomics Symposium Genetics and Genomics in Day to Day Medical Practice

Children's of Alabama 4th Floor, Children's Harbor Building
1600 6th Avenue South
Birmingham, Alabama

March 03, 2017 8:00 am - 3:30 pm

Upon completion of this live activity, participants will be able to:

• Recognize features of a child who may benefit from a genetic evaluation.

• Identify the benefits and limitations of chromosomal microarray array testing.

• Distinguish when a child may benefit from broad molecular-based testing strategies (such as whole exome or whole genome sequencing).

• Utilize practical resources for the healthcare management of a child with a genetic condition.

• Reflect on the psychosocial needs of the family of a child with a genetic condition.

• Review outcomes from existing genetic programs in the region

Download the brochure and register here.

Alaska

Fat Tuesday Pancake Dinner

First Christian Church Fellowship Hall
3031 LaTouche Street
Anchorage, Alaska

February 28, 2017 6:00 pm - 7:45 pm

Fat Tuesday Pancake Dinner
It’s February in Alaska!  Help us fight

hy-PER-thermia

and raise money for

the National Foundation for Ectodermal Dysplasias!

6 pm on Tuesday, February 28, 2017

First Christian Church

Fellowship Hall

3031 LaTouche Street, Anchorage

 

Alaskan 1000-mile Iditarod Sled Dog Race

Alaskan Iditarod
4th & D Street
Anchorage, Alaska

March 04, 2017 - March 16, 2017 All Day

The Iditarod is a 1000-mile race across Alaska. Cindy Abbott, a rare disease advocate, and her team of 16 amazing canine athletes will spend 12-13 days crossing mountain ranges, frozen rivers and lakes, traveling through some of the world’s most beautiful yet hassle terrain. Her goal: to get the NORD banner (she held on the summit of Mt Everest in 2010 and at the finish line of the 2015 Iditarod) once again to the finish line in Nome in a continuing effort to raise rare disease awareness.

Arizona

Arizona Carcinoid & Neuroendocrine Cancer–A Rare Disease Educational Event

MD Anderson Cancer Center
2946 E. Banner Gateway
Gilbert, Arizona

February 28, 2017 10:00 am - 2:00 pm

This is a panel discussion presented by eight experts on the rare disease of carcinoid and neuroendocrine cancer.  Participants may participate at one of three sites in the State of Arizona, or may view through internet streaming.  The purpose of this event is to provide clinicians, health professional students with information and  knowledge about carcinoid and neuroendocrine cancer so that earlier diagnosis and referral to appropriate oncological experts can occur in a timely manner to provide for better outcomes.  As well, this event will provide information on current and upcoming modalities to patients and caregivers.  Questions can be submitted in advance through the registration available at www.surveymonkey.com/neuroendocrinecancer

This event is presented in collaboration with MD Anderson Cancer Center in Gilbert, Arizona and Arizona Carcinoid & Neuroendocrine Foundation, Inc.

Arkansas

Arkansas Rare Disease Day Advocacy Event

Arkansas State Capitol
500 Woodlane Street
Little Rock, Arkansas

March 08, 2017 All Day

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.
The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Arkansas
In order to register for this event, please visit the Rare Action Network website here.

California

California Rare Disease Day Advocacy Event

California State Capitol
1303 10th Street
Sacramento, California

February 28, 2017 10:00 am - 3:00 pm

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of California.

In order to register for this event, please visit the Rare Action Network website here. 

8th Annual SBP Rare Disease Day Symposium

Sanford Children's Health Research Center
1905 Road to the Cure
La Jolla, California

February 24, 2017 9:00 am - 6:00 pm

The annual Rare Disease Day Symposium at Sanford Burnham Prebys Medical Discovery Institute (SBP) seeks to serve patients and families affected by rare genetic diseases.

The 2017 SBP Rare Disease Day event, scheduled to be held Friday, February 24, 2017 at the SBP campus in La Jolla, CA, will be the first scientific conference focusing specifically on Alagille Syndrome.

Alagille Syndrome (ALGS) is a rare genetic disorder that can affect the liver, heart, and other parts of the body. It is estimated that 1 in 70,000 infants are born with ALGS. The severity of the disorder ranges from mild to patients who need liver or heart transplants.

Expert talks at the 2017 meeting will provide particular emphasis on:

  • biliary paucity
  • genetic mechanism
  • Notch signaling
  • biliary development/regeneration

Scientists, clinicians, advocates, patients and their families are invited to join experts in the ALGS field to foster new perspectives, ideas, and collaborations and accelerate efforts toward a cure for Alagille Syndrome.

 

Learn more about this event and register here. 

California

UCSF Rare Disease Symposium: “Negotiating the Challenges of Therapeutics Discovery for Rare Diseases

Genentech Hall (Byers Auditorium) UCSF Mission Bay
600 16th Street
San Francisco, California

March 03, 2017 8:30 am - 6:30 pm

The goals of the Rare Diseases Symposium at UCSF are:

  • To create a community of academic scientists, business leaders, regulatory experts and patient advocacy groups with a common interest to tackle rare diseases
  • To examine the key issues in development of treatments for rare diseases
  • To draw attention to and encourage research in origins and treatments of rare diseases
  • To showcase ground-breaking research in rare diseases at UCSF
  • To foster collaborations between academia, industry, and non-profit organizations

Click here for registration.

California

No Disease Left Behind: Rare Disease Week

University of the Pacific Thomas J. Long School of Pharmacy
3601 Pacific Avenue
Stockton, California

February 28, 2017 - March 03, 2017 All Day

 

Tuesday: Short Rare disease information presentation (either 9:50-10, 10:50-11 in R103 or PHS115)

Beginning of photo campaign of why we care about rare diseases and/or photo campaign of wearing rare disease ribbons competition

– Will be walking around the pharmacy campus to ask and write down why people care about rare diseases

– Will be handing out rare disease Zebra ribbons to people on campus

– To enter the competition, either take a photo of your note of why you care about rare diseases AND/OR take a picture of the ribbon that is handed out

– Add NDLB on instagram (@nodiseaseleftbehind), use the hashtag #UOPrarediseaseweek, and make your profile public

-Each entry will be entered into a raffle for a gift card/prize

*Do not need to be a student at University of Pacific to enter*

Wednesday: PaintNite Fundraiser

Price: $45  (Please try to buy tickets before February 15th)

Where: Fat’s Bar and Grill, 455 N. Pershing Ave. Stockton, CA

When March 1st7-9 PM

Who: Everyone is welcome. Attendees don’t have to be a student of University of the Pacific.

 

*Note there is a cap of 45 tickets and need to be older than 21 years old

Thursday: Rare disease speaker event, TBD

Friday: End of photo campaign, winners will notified.

Rare Disease Day Celebration and Benefit Party

The Loma Club
2960 Truxtun Road
San Diego, California

February 25, 2017 4:00 pm - 8:00 pm

In recognition of Rare Disease Day 2017, we invite you to join us for the 2nd annual DDX3X Foundation benefit party at The Loma Club on Saturday evening, February 25th, 2017. The DDX3X benefit will feature live music by Jerry’s Middle Finger, local cuisine, a raffle, silent auction, cash bar and jumpy for kids. The festivities begin at 4:00 pm following the Golf Classic. This is a kid friendly event, and we hope you can make it. Please feel free to bring friends and make sure to RSVP so we can get an accurate attendee count.

Link to the Golf Classic Event Page: (https://www.facebook.com/events/1859085697637836/).

DDX3X is a rare, de novo genetic mutation that impacts development from conception onward in affected females. Girls with this mutation have intellectual disabilties of ranging severity, mobility challenges, communication limmitations, sensory disregulation, and various medical complications such as vision and hearing problems or seizures. The DDX3X mutaition is a newly discovered, rare disorder that currently impacts around 100 people worldwide. We are raising funds for the DDX3X Foundation whose mission is to drive research to improve treatment options for affected girls and their families. The DDX3X Foundation is currently working to fund Dr. Elliott Sherr’s study to understand this disease and to develop therapies to improve the lives of those affected. Dr. Sherr is an accomplished neurologist, professor and reseracher at UCSF and he is leading the way in research on the DDX3X mutation.

To donate directly to the DDX3X Foundation, plesase use this link:https://delcf.org/donations/ddx3x/, which can also be found by clicking the ‘Donate’ button on the www.ddx3x.org website homepage.

Share Your “Rare Disease Story” on ChronicallyAwesome.org

www.chronicallyawesome.org
27068 La Paz Road #745
Aliso Viejo, California

February 28, 2017 - March 01, 2017 All Day

Patients have and will continue to make a difference.

The power of your words will create possibilities and possibilities are limitless!

Between now and February 27th, The Chronically Awesome Foundation is accepting creative submissions that represent your “Rare Disease Story”. This event is one of many nationwide events that are a part of Rare Disease Day. On Rare Disease Day your story will be published, your story will be read or seen or heard. You will make a difference, the possibilities are limitless!

We will accept:

  • Blogs
  • Poetry
  • Short Stories
  • Videos (Embed links to YouTube)
  • Photographs or Collages
  • Images of creative work: paintings, sculpture, etc.
  • Music (email to discuss submission)

Email your work to submissions@chronicallyawesome.org

We look forward to reading and publishing your “Rare Disease Story” on February 28th. Sharing your story with the entire Chronically Awesome Community as well as lawmakers, policy makers, research and industry stakeholders will begin on Rare Disease Day and continue beyond that date.

While we celebrate the efforts of patients on Rare Disease Day and shine a light on the illnesses that are often in the dark, the work does not end on March 1st. Your posts will remain on ChronicallyAwesome.org after Rare Disease Day.

Colorado

Colorado Rare Disease Day Advocacy Event

Colorado State Capitol
200 E Colfax Ave.
Denver, Colorado

February 28, 2017 8:30 am - 10:30 am

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Colorado.

In order to register for this event, please visit the Rare Action Network website here.

Connecticut

Rare Disease Day 2017 hosted by the Frank H. Netter MD School of Medicine

Frank H. Netter MD School of Medicine
370 Bassett Road
North Haven, Connecticut

February 27, 2017 1:00 pm - 4:00 pm

RDD2017_Flier

 

Please join the Frank H. Netter MD School of Medicine and Quinnipiac University in celebrating our 3rd annual Rare Disease Day!

The global theme for 2017 is Research Brings Hope to People Living with a Rare Disease. Our agenda for the day includes:

  • Introduction – Dr. Bruce Koeppen, Dean of Netter SOM
  • Patient and Parent Panel
  • Raffle
  • Keynote Speaker – Dr. Pramod Mistry, researcher and advocate for people living with Gaucher Disease
  • Closing, Reflective Activity, and Viewing of an Art Exhibit curated by Lucas Kolasa, one of the artists who paints people with rare diseases and who was recently featured on CBS Sunday Morning.

REGISTER HERE

We hope to see you there! Please contact Molly Clarke with any questions or comments at molly.clarke@quinnipiac.edu.

Connecticut Rare Disease Day Advocacy Event

Legislative Office Building
300 Capitol Ave.
Hartford, Connecticut

February 28, 2017 8:30 am - 10:30 am

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Connecticut.

In order to register for this event, please visit the Rare Action Network website here.

District of Columbia

Sarcoidosis Awareness Month and it’s Impact Congressional Briefing

Capitol Building Home Visiting Center Room-HVC 201AB
First St NE
Washinton, District of Columbia

February 27, 2017 12:00 pm - 2:00 pm

Sarcoidosis Awareness Month and it’s Impact Congressional Briefing

Congressional briefing on Monday, February 27, 2017 at Capitol Building Hospitality Center  Room-HVC 201AB Conference Room to help advance knowledge of this disease as well as to introduce a proclamation that will recognize April as Sarcoidosis Awareness Month. The event is sponsored by the office of Congressman Lee Zeldin (R-NY) and will include powerful testimony from patients, whose lives have been robbed by this disease, including a retired U.S. Army Sergeant Major and former New York City police officer who responded to the tragedy on 9/11.

Attendees will enjoy lunch and the opportunity to speak with patient advocates who are committed to utilizing their personal experiences with sarcoidosis to support patients, inform doctors of this disease, and to advance research. Strides in research and awareness will help not only those affected by sarcoidosis, but the estimated 30 million patients suffering from any rare disease in the United States.

Kelli Beyer – Director of Education and Outreach, Foundation for Sarcoidosis Research   

Mary McGonagle, MD – Patient Ambassador, Foundation for Sarcoidosis Research

Frank Rivera – Founder, Sarcoidosis of Long Island- Patient Ambassador, Foundation for Sarcoidosis Research

Raul Martinez – Patient Ambassador, Foundation for Sarcoidosis Research (Retired U.S. Army Sergeant Major and former NYC police officer who responded on 9/11)

Georgia

Hawaii

Hawaii Rare Disease Day Advocacy Event

Hawaii State Capitol
415 S Beretania Street
Honolulu, Hawaii

February 24, 2017 10:00 am - 12:00 pm

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Connecticut.

In order to register for this event, please visit the Rare Action Network website here.

Indiana

Kansas

Kansas Rare Disease Day Advocacy Event

Kansas State Capitol
300 SW 10th Street
Topeka, Kansas

March 06, 2017 10:00 am - 12:00 pm

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Kansas.

In order to register for this event, please fill out the form on the Rare Action Network website here. 

Kentucky

Kentucky Rare Disease Day Advocacy Event

Kentucky State Capitol-Rotunda
700 Capitol Ave.
Frankfort, Kentucky

February 28, 2017 12:00 pm - 2:00 pm

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Kentucky.

In order to register for this event, please fill out the form on the Rare Action Network website here.

Kentucky Rare Disease Day Advocacy Event

Kentucky State Capitol, Rotunda
700 Capitol Ave.
Frankfort, Kentucky

February 28, 2017 12:00 pm - 2:00 pm

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Kentucky.

In order to register for this event, please visit the Rare Action Network website here.

Maryland

Maryland Rare Disease Day Advocacy Event

MD House Office Building, Room 431 (the Eastern Shore Delegation room)
6 Bladen Street
Annapolis, Maryland

February 28, 2017 8:30 am - 12:00 pm

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

Formal program from 8:30am-10am
Immune Deficiency Foundation will give a brief training on advocating to elected officials.
Individuals will then have the opportunity to visit with some legislators.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Georgia.

In order to register for this event, please fill out the form on the Rare Action Network website here.

Rare Disease Day at NIH

National Institutes of Health
10 Center Drive
Bethesda, Maryland

February 27, 2017 8:30 am - 4:00 pm

Rare diseases affect an estimated 25 million Americans. Join hundreds of scientists, patients and their advocates, and many others for Rare Disease Day at NIH to raise awareness about these diseases, the people they affect, and research collaborations that are making a difference. Sponsored by the National Institutes of Health’s (NIH) National Center for Advancing Translational Sciences (NCATS) and the NIH Clinical Center, the event will take place:

 

Feb. 27, 2017, 8:30 a.m. to 4:00 p.m.

Masur Auditorium, NIH Clinical Center (Bldg. 10)

10 Center Drive, NIH Campus

Bethesda, MD 20892

 

Register and view the agenda at https://events-support.com/events/NIH_Rare_Disease_Day.

 

The day will feature presentations, posters and exhibits, tours of the NIH Clinical Center, and an art show. The event is open to the public, and admission is free. In support of Global Genes’ participation, attendees are encouraged to wear their favorite jeans. Participants can share their thoughts, photos and experiences during the day via social media using hashtag #RDDNIH. The event also will be webcast at http://videocast.nih.gov/.

 

Learn more about Rare Disease Day at NIH at https://ncats.nih.gov/rdd. Individuals with disabilities who need reasonable accommodations to participate in this event should contact Kimberly Potter at kimberly.potter@icfi.com or 301-509-3655 and/or the Federal Relay number at 1-800-877-8339. Requests should be made at least 5 days in advance of the event.

Massachusetts

All Aboard for Rare Disease Research

MBTA Red Line
Massachusetts Bay Transportation Authority
Boston, Massachusetts

February 06, 2017 - March 06, 2017 All Day

In honor of Rare Disease Day, Cambridge BioMarketing is taking over advertisement space on the inside and outside of a train car on the MBTA’s Red Line. We’re asking the public to spot our rare train and spread the word on social media using #SupportTheSearch. For every post, a donation will be made to help to raise donations for rare disease research. If you don’t live in Boston, you can still help raise funds by posting a picture or inspirational message using #SupportTheSearch.

Massachusetts Rare Disease Day Advocacy Event

Massachusetts State House
24 Beacon Street
Boston, Massachusetts

February 28, 2017 11:00 am - 12:00 pm

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.
The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Massachusetts.
In order to register for this event, please visit the Rare Action Network website here.

Michigan

Michigan Rare Disease Day Advocacy Event

Michigan State Capitol, Room 405
100 N Capital Ave.
Lansing, Michigan

February 28, 2017 11:00 am - 12:30 pm

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Michigan.

In order to register for this event, please visit the Rare Action Network Website here.

Minnesota

University of Minnesota Rare Disease Day

McNamara Alumni Center
200 SE Oak St
Minneapis, Minnesota

February 24, 2017 11:00 am - 1:00 pm

The University of Minnesota Rare Disease Day will feature both researchers and patient advocacy groups.  The luncheon includes a poster display, patent advocacy group tables, and keynote speaker, Steve Groft, PharmD, former Director, NIH Office of Rare Disease Research.

Minnesota Rare Disease Day Advocacy Event

Minnesota State Capitol
75 Rev Dr. Martin Luther King Jr. Boulevard
St. Paul, Minnesota

February 27, 2017 11:00 am - 12:30 pm

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Minnesota.

In order to register for this event, please visit the Rare Action Network Website here.

Mississippi

Mississippi Rare Disease Day Advocacy Event

Mississippi State Capitol
400 High Street
Jackson, Mississippi

February 21, 2017 8:00 am - 11:00 am

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Mississippi.

In order to register for this event, please visit the Rare Action Network website here.

Missouri

Missouri Rare Disease Day Advocacy Event

Missouri State Capitol Building
201 W. Capitol Ave.
Jefferson City, Missouri

February 28, 2017 10:00 am - 1:00 pm

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Missouri.

In order to register for this event, please fill out the form on the Rare Action Network website here.

Nevada

Vegas Cares About Rare 5K Run/1M Walk

Vegas Cares About Rare
10624 S. Eastern Avenue #A847
Henderson, Nevada

February 25, 2017 All Day

The inaugural Vegas Cares About Rare 5K Run / 1M Walk is scheduled for Saturday, February 25, 2017, in Las Vegas.

Run as an individual or create/join a team and help create awareness for kids with rare disorders! ($5 discount for team runners). 5K run/walk will be timed, 1M fun run will not be timed.

More details at http://www.VegasCaresAboutRare.org/
(Download flyer, view FAQs, sponsorship and volunteer information, etc.)

This event is scheduled to commemorate the celebration of Rare Disease Day, which takes place on the last day in February each year.

Did you know:
* There are over 7,000 rare diseases in the world
* Rare disease affects 1 in 10 Americans
* More than 50% of rare diseases affect children
* 30% of children diagnosed with rare and genetic disorders don’t live to see their 3rd birthday

 

This event is being organized by the Little Miss Hannah Foundation.

Nevada Rare Disease Day Advocacy Event

Nevada State Capitol Building
101 N Carson St.
Carson City, Nevada

February 28, 2017 9:30 am - 12:30 pm

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Nevada.

In order to register for this event, please fill out the form on the Rare Action Network website here. 

New Hampshire

New Hampshire Rare Disease Day Advocacy Event

New Hampshire State Capitol Building-Cafeteria
25 Capitol Street
Concord, New Hampshire

March 01, 2017 All Day

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of New Hampshire.

In order to register for this event, please fill out the form on the Rare Action Network website here.

New Jersey

New Jersey Rare Disease Day Advocacy Event

New Jersey Business and Industry Association (NJBIA)
10 West Lafayette Street
Trenton, New Jersey

February 27, 2017 9:00 am - 3:00 pm

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The Rare Disease Day morning events will take place at the New Jersey Business and Industry Association (NJBIA)  from 9:00 a.m. – 11:30 a.m.

The morning will begin with coffee, pastries and networking, followed by speakers from the rare disease community including patients, patient advocates, legislators, and biomedical healthcare professionals and industry leaders.

Topics will include addressing the needs of people with rare diseases through legislation, inclusion of the patient voice in the drug development process, rare disease research initiatives, and the spirit of innovation in New Jersey.  A member of the New Jersey Legislature will present a ceremonial resolution commemorating Rare Disease Day 2017 in New Jersey.

Following the speakers, patient advocates will walk to the State House to meet with legislators.  The day’s events are being sponsored by BioNJ, HINJ, New Jersey Rare Disease Alliance and NORD.

 

In order to register for this event, please fill out the form on the Rare Action Network website here.

New York

Rare Disease Day @ Regeneron

Tarrytown, New York
Old Saw Mill River Road
Tarrytown, New York

February 28, 2017 10:00 am - 4:00 pm

The Regeneron Genetics Center (RGC) from Regeneron Pharmaceuticals Inc. is hosting “Rare Disease Day @ Regeneron” with the purpose of informing the community on the importance of studying rare diseases and bringing together scientists, collaborators, patients, and patient organizations to recognize the efforts, successes, and challenges in studying rare diseases and finding therapies for them.

The event will take place on Rare Disease Day, February 28 2017 and will highlight presentations from patient representatives and organizations, and researchers working in rare diseases and therapeutic development.

To attend please contact the organizer: Dr. Claudia Gonzaga-Jauregui (cgonzagaj@gmail.com)

Metropolitan Supports Rare Disease

Metropolitan Hospital Center
1901 1st Avenue
New York, New York

February 28, 2017 12:00 am

11:00 – 2:00: Informational displays from hospital staff, patient advocacy groups and company representatives. Opportunity for Q&A. (Main lobby)

2:00 – 3:00: Brief presentations from hospital staff, patients, friends and family members (11th floor gym)

3:00 – 5:00: Entertainment, food and activities for patients and their families (11th floor gym, RSVP required)

2017 Rare Disease Day Celebration

Albert Einstein College of Medicine
1300 Morris Park Ave
Bronx, New York

February 28, 2017 2:00 pm - 5:30 pm

Come join us for the 5th Annual Rare Disease Day Celebration at Albert Einstein College of Medicine/Montefiore featuring a presentation and photography exhibit by Levi Gershkowitz, from Living in the Light of Rare Diseases, and engaging panel discussion of Patient Advocates. Can’t join us in New York? Help spread the word by sharing this event with the other patient advocates and caregivers you know in the NYC area.

-Food
-Live music
-Photography Exhibit
-Research Poster Session

Sponsored by the Rose F. Kennedy Intellectual and Developmental Disabilities Research Center, the division of genetics, the department of pediatrics and the Molecular and Cellular Foundations of Medicine course.

North Carolina

Danielle’s Hope: Operation Rejuvenation

Southeastern Healthcare of North Carolina
3401 Carl Sandburg Court
Raleigh, North Carolina

February 25, 2017 11:00 am - 3:00 pm

Operation Rejuvenation is a day created and facilitated by Danielle’s Hope to raise awareness of rare diseases and special needs of children within our community and the parents/caregivers that care for them on a daily basis.

This day of relaxation for parents and caregivers is focused on raising awareness, promoting self-care, creating a non-judgmental atmosphere amongst others with similar experiences, and offer a time for sharing & networking.

Please visit our website for more information & to register!

Ohio

Ohio Rare Disease Day Advocacy Event

Ohio State House-State Room
1 Capitol Square
Columbus, Ohio

February 28, 2017 11:30 am - 1:00 pm

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.
The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Ohio.
In order to register for this event, please visit the Rare Action Network Website here.

Oklahoma

Oklahoma Rare Disease Day Advocacy Event

Oklahoma State House
2300 N. Lincoln Blvd.
Oklahoma City, Oklahoma

February 28, 2017 10:00 am - 12:00 pm

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Oklahoma.

In order to register for this event, please visit the Rare Action Network website here.

Oregon

Pennsylvania

Rare Disease Day at Spark Therapeutics

Spark Therapeutics
3737 Market Street
Philadelphia, Pennsylvania

February 01, 2017 - February 28, 2017 All Day

Spark Therapeutics is currently planning a number of activities, from writing an informative article for the A Shared Vision retinal disease website to hosting an internal event featuring families affected with rare diseases to getting involved in local community activities. http://www.sparktx.com

Pennsylvania Rare Disease Day Advocacy Event

Pennsylvania State Capitol, Main Rotunda
501 N. 3rd Street
Harrisburg, Pennsylvania

March 14, 2017 9:00 am - 12:00 pm

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Pennsylvania.

Tentative Agenda*

9:00am-11:00am: Meetings with Legislators

11:00am-12:00pm: Press Conference, Main Rotunda

12:00pm-1:30pm: Lunch

*Subject to change

In order to register for this event, please fill out the form on the Rare Action Network website here.

South Dakota

2017 Great Plains Rare Disease Community Summit

Sanford Center
2301 East 60th Street
Sioux Falls, South Dakota

February 25, 2017 9:00 am - 4:30 pm

Join us for a day of learning, networking and most importantly, connecting.  At this event, people living with a rare disease and/or their caregivers will be able to connect with other people with the rare disease community, attend speaker panels with presentations followed by question and answer sessions, and visit with local organizations and vendors that support the rare disease community.

http://www.sanfordresearch.org/cords/newsevents/thegreatplainsrarediseasesummit/

7th Annual Sanford Rare Disease Symposium

Sanford Center
2301 East 60th Street
Sioux Falls, South Dakota

February 24, 2017 8:30 am - 4:30 pm

The Sanford Children’s Health Research Center and the Coordination of Rare Diseases at Sanford are proud to host the annual Sanford Rare Disease Day in honor of Rare Disease Day. The goal of the Sanford Rare Disease Symposium is to raise public awareness of the importance of rare disease research and provide information to scientists and healthcare providers. http://www.sanfordhealth.org/classes-and-events/events/7th-annual-sanford-rare-disease-symposium

Texas

Advocacy Workshop Meeting

Hotel Indigo Austin Downtown – University
810 Red River Street
Austin, Texas

March 07, 2017 - March 09, 2017 All Day

In honor of Rare Disease Day, the Rare Action Network (RAN) is inviting Texas State Residents to join the first RAN Advocacy Workshop and Meeting, to be held March 7-9, in Austin, TX!  This is a free meeting that will give you the opportunity to connect, learn, and share with other rare disease advocates.

In order to register for this event and for more details, please CLICK HERE. 

Rare Disease Day resource fair

The United Way of Greater Houston
50 Waugh Drive
Houston, Texas

February 25, 2017 9:00 am - 1:00 pm

Please join us at the 2nd annual Rare Disease Day event, raising awareness about rare diseases with booths hosted by members of 30 rare disease organizations. Short seminars will be held too!
FREE and open to the community.
10:00AM Introduction by Dr. Brendan Lee, Professor and Chairman, Molecular and Human Genetics, Baylor College of Medicine
Clinical Trials and Rare Diseases presented by Dr. William Craigen, Dept. of Molecular and Human Genetics, Baylor College of Medicine.
En Español: Ensayos Clínicos y Enfermedades Raras, por Dr. William Craigen.
Favor de llamar a 832-822-4182 para reservar audífonos para traducción en español.

11:00AM Important Information for Healthcare Transition to be presented by Dr. Elisha Acosta and Perla Aparicio, LBSW, Transition Medicine Clinic, Baylor College of Medicine

12:00 PM En Español: Información importante para la transición de salud por Dr. Elisah Acosta and Perla Aparicio, LBSW

To register: www.bcm.edu/rare-disease-day

Utah

Utah Rare Disease Day Advocacy Event

Utah State Capitol Building
350 State Street
Salt Lake City, Utah

February 28, 2017 3:30 pm - 5:30 pm

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Oregon.

In order to register for this event, please fill out the form on the Rare Action Network website here.

Utah Rare Disease Day Symposium

Salt Lake City Marriott University Park
480 Wakara Way
Salt Lake City, Utah

March 04, 2017 1:00 pm - 5:00 pm

Please join us for our 3rd annual Utah Rare Symposium. We have an incredible day planned for you- bringing you together with other rare families, clinicians and resources for finding support and living with a rare or undiagnosed disease. Registration is now open and seating is limited. Our session will end with a book signing with Jason and Heather Hansen, parents of the beautiful Kennedy Hansen. The first 15 registrants will receive a free copy of the book, Kennedy’s Hugs. (one per family)

Saturday, March 4, 2017

Check in: 1:00 pm – All attendees who register before February 10th will receive a Utah Rare tote bag (one per family).

Symposium 2-4pm

4-5pm Book signing and social hour with light refreshments

Thank you for all the support you have shown us over the years. We can’t wait to see you next spring!

Some of our topics will include:

Genetic Testing: What will it tell me?
How to Create a Care Team for Patient
From Bench to Bedside: How are medicines created
How to talk to children and teens about their health
The importance of creating a family history of health
Managing your relationship during a medical journey
Sharing Your Story

Register at https://www.eventbrite.com/edit?eid=29491238087

Virginia

Virginia Rare Disease Day Advocacy Event

General Assembly Building, 4th Floor West Conference Room
201 N 9th St
Richmond, Virginia

February 21, 2017 9:30 am - 11:30 am

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Virgina.

In order to register for this event, please visit the Rare Action Network site here.

Wisconsin

Wisconsin Rare Disease Day Advocacy Event

Wisconsin State Capitol, Rotunda
2 E. Main St.
Madison, Wisconsin

February 27, 2017 11:00 am - 1:00 pm

Rare disease advocates have joined with the National Organization for Rare Disorders (NORD), the national sponsor of Rare Disease Day in the US, to organize this special event for legislators, legislative staff, the public and the media.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level, and the implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of the American public are addressed. Connect with and hear from patients, caregivers and other stakeholders about the challenges and triumphs of living with rare diseases in the great state of Wisconsin.

In order to register for this event, please visit the Rare Action Network website here.