Days To Go

0

0

3

Event Locations

 Interested in hosting an event in your state? Click here to create an event. Want to get involved but don’t know where to start? Click here for some suggestions.

1 2 3 4 5 6
Loading Map....

Filter

Alabama

Alabama Rare Disease Day 2018 2-Day Advocacy Event

Alabama State House
11 South Union Street
Montgomery, Alabama

March 06, 2018 - March 07, 2018 All Day

Alabama Rare Disease Day 2-Day Advocacy Event

Advocacy Training Day  Tuesday March 6, 2017  
Alabama State House – Rm. 200, 11 S Union St 738, Montgomery, AL 36130
12:30 pm – 5 pm

Rare Disease Day  Wednesday March 7, 2017 
Alabama State House – 6th Floor Rotunda, 11 S Union St. 738, Montgomery, AL 36130
8 am – 3 pm  (Lunch will be provided)

The goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored.  This is an opportunity for patients, caregivers, medical professionals and industry representatives to come together and educate elected officials about rare diseases and what it’s like to live with or care for someone with a rare disease in the state. Register today!

Arizona

Arizona Rare Disease Day 2018

Arizona State Capitol
1700 West Washington
Phoenix, Arizona

February 28, 2018 11:00 am - 1:00 pm

Arizona State Capitol, 1700 W Washington, Phoenix, Arizona 85007

The goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored.  This is an opportunity for patients, caregivers, medical professionals and industry representatives to come together and educate elected officials about rare diseases and what it’s like to live with or care for someone with a rare disease in the state. Register today!

Swing Fore the Kids

TopGolf Scottsdale
9500 Talking Stick Way
Scottsdale, Arizona

February 26, 2018 6:30 pm - 9:30 pm

The Crain Family Foundation is hosting our second annual Swing into Spring Event at Topgolf! Meet and play with celebrity players and coaches, enjoy great food, drinks, and company, AND support an amazing cause!

Our event will be held on Monday, February 26, 2018 at Topgolf Scottsdale. This year we have partnered with The Newkirk Family to help raise awareness about rare diseases.  Visiting The Clinic for Special Children was a “game changer” as far as getting specific treatment and care for their son Charlie.  We, The Crain Family as well as the Newkirk Family, are passionate about helping other families visit The Clinic for Special Children as well as raising awareness about rare disease.

Arkansas

Arkansas Rare Disease Day 2018

Arkansas State Capitol
500 Woodlane Street
Little Rock, Arkansas

March 20, 2018 11:00 am - 1:00 pm

March 20, 2018 at 11:00am

Arkansas State Capitol, 500 Woodlane Street, Little Rock, Arkansas 72201

The goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored.  This is an opportunity for patients, caregivers, medical professionals and industry representatives to come together and educate elected officials about rare diseases and what it’s like to live with or care for someone with a rare disease in the state. Register today!

California

Rare Disease Walk

University of Pacific
3601 Pacific Ave
Stockton, California

February 28, 2018 12:00 pm - 1:00 pm

Our No Disease Left Behind student group at University of Pacific (UOP) is excited to announce that we will be hosting a Rare Disease Walk on February, 28, 2018 at 12:00 to 1:00 PM. We will be walking around the Stockton campus at UOP and raise awareness by educating the people we come across on what an orphan disease is and what support they can give. With each step we take, we will be walking across campus in celebration and support of Rare Disease fighters everywhere.

Rare Disease Day

North University Library
8820 Judicial Dr
San Diego, California

March 03, 2018 2:00 pm - 4:00 pm

Two speakers from NORD will be coming to share their experience and knowledge regarding rare diseases. The event will be focused on rare disease advocacy through stimulating interest in the sciences and rare disease education. Everyone is welcome to attend.

California Rare Disease Day 2018

California State Capitol
1315 10th Street
Sacramento, California

February 28, 2018 10:00 am - 3:00 pm

California State Capitol, Capitol Steps, 1315 10th St, Sacramento, CA 95814

The goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored.  This is an opportunity for patients, caregivers, medical professionals and industry representatives to come together and educate elected officials about rare diseases and what it’s like to live with or care for someone with a rare disease in the state. Register today!

Colorado

Colorado Rare Disease Day 2018

Colorado State Capitol
200 East Colfax Avenue
Denver, Colorado

February 28, 2018 8:00 am - 9:00 am

February 28, 2018 at 8:00am

Colorado State Capitol, 200 East Colfax Avenue, Denver, CO 80203

The goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored.  This is an opportunity for patients, caregivers, medical professionals and industry representatives to come together and educate elected officials about rare diseases and what it’s like to live with or care for someone with a rare disease in the state. Register today!

Connecticut

Rare Disease Day at Quinnipiac University

Quinnipiac University North Haven Campus
370 Bassett Rd
North Haven, Connecticut

February 27, 2018 12:00 am

Our event will include an opening from our dean as well as the RDD planning committee co-chairs. We then have an ice breaker event planned, followed by a keynote speaker and then a patient panel. We also will be conducting a RDD library composed of books that are rare diseased-themed, and will have a reading from one of the books during our event.

Connecticut Rare Disease Day

Legislative Office Building
300 Capitol Avenue
Hartford, Connecticut

February 28, 2018 - March 28, 2018 8:30 am - 11:00 am

February 28, 2018 at 8:30 am

Legislative Office Building, 300 Capitol Avenue, Hartford, CT 06106
The goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored.  This is an opportunity for patients, caregivers, medical professionals and industry representatives to come together and educate elected officials about rare diseases and what it’s like to live with or care for someone with a rare disease in the state. Register Today!

DC

Racefor7 A 7 mile run or walk against the 7000 rare diseases

Washington Monument, Washington DC
2 15th St NW
Washington, DC

February 25, 2018 9:45 am - 12:00 pm

#Racefor7 is a 7 mile run for the cause of over 70 million patients with rare diseases in India with a significant public health burden.
The run occurs simultaneously in Bengaluru, Mumbai, and around the Washington Monument on the 25th, last Sunday of Feb.
This run in USA will extend a global chain of ~7000 runners in India.
We are collaborating with George Mason University, Virginia and seeking additional partners, sponsors, and promoters even to extend beyond Washington DC.
We will be exhibiting at the National Institutes of Health rare disease day event #NIHRDD on March 1st like last year.
Event: 7 mile run #Racefor7 #Rarediseaseday
Venue: Washington Monument, DC.
Date/Time: 25th Feb Sunday; 9:45am
Registration: Online registration required (www.racefor7usa.com)
Request: Distribute widely across your organization and friends as appropriate.
All registered runners/walkers will get a hooded zipper like shown in the attached.

Florida

Rare Disease 2018 – Celebrating Newborn Screening ALD

Well Care Building
6805 West Conlonial Drive
Orlando, Florida

February 28, 2018 9:00 am - 1:00 pm

Orlando Rare Disease Day event with special guest speaker, Ann Moser, Kennedy Krieger, and a spokesperson from the Tallahassee Newborn Screening Office.
https://www.facebook.com/events/1439362119509418/

Rare Disease Day Dance Party @ UF Shands

UF Health Shands Hospital Atrium
1600 SW Archer Road
Gainesville, Florida

February 28, 2018 3:00 pm - 5:00 pm

Dance party to celebrate being rare! Event kick-off at 3pm with invited speakers:  Rachel Auld with UF Dance Marathon; Dr. Nicole Paradise Black with University of Florida Department of Pediatrics; Fran Hokkanen National Organization for Rare Disease, Florida state ambassador.

  • Join the 2018 social media face painting campaign, and post a selfie to your social media channel.
  • Network with UF Health research teams and learn about Rare Disease Day.
  • Dance party with University of Florida Dance Marathon.

https://www.facebook.com/events/213872365825650/

Rare Disease Day Awareness Event

University of North Florida
Building 57 room 1100A
Jacksonville, Florida

February 28, 2018 12:00 pm - 2:00 pm

This year’s Rare Disease Awareness event will focus on Mitochondrial disorders. Discussion will follow the presentation by Dr. Beyza Aslan. Lunch will be provided.

Georgia

Dare To Be Rare

Ms Ro's Dance Closet
3761 main Street
College Park, Georgia

February 28, 2018 7:30 pm - 9:30 pm

http://evite.me/DFrwRy6ktw

Hawaii

Hawaii Rare Disease Day 2018

Moili'ili Community Center
2535 South King Street
Honolulu, Hawaii

March 05, 2018 10:30 am - 1:30 pm

March 5, 2018 at 10:30am

Moili’ili Community Center, 2535 South King Street, Honolulu, HI 96826

The goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored.  This is an opportunity for patients, caregivers, medical professionals and industry representatives to come together and educate elected officials about rare diseases and what it’s like to live with or care for someone with a rare disease in the state. Register today!

IL

Rare Disease Awareness and Education Day

Continuum Clinical
650 Dundee Road
Northbrook, IL

February 28, 2018 10:00 am - 12:00 pm

Continuum Clinical Patient Recruitment will host an employee Rare Disease awareness event, including face painting and photo opportunities. The purpose of this event is to educate our teams about the social, physical, emotional, and financial implications associated with a rare disease diagnosis.

Illinois

Illinois Rare Disease Day 2018

Illinois State Capitol
401 South Second Street
Springfield, Illinois

February 28, 2018 9:00 am - 2:30 pm

February 28, 2018 at 9:00am

Illinois State Capitol, 401 South Second Street, Springfield, IL 62707

The goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored.  This is an opportunity for patients, caregivers, medical professionals and industry representatives to come together and educate elected officials about rare diseases and what it’s like to live with or care for someone with a rare disease in the state. Register today!

Iowa

Rare Disease Day @ ISU

Iowa State University
2229 Lincoln Way
Ames, Iowa

February 28, 2018 6:00 pm - 8:00 pm

This year, Iowa State University will host its first Rare Disease Day event to spread awareness about rare conditions and the issues faced by the individuals affected by them. The event will consist of a presentation about rare conditions overall, followed by a poster session about specific rare conditions.

Come enjoy free pizza and spread awareness!

https://www.facebook.com/events/579937932338460/

 

Kentucky

Kentucky Rare Disease Day 2018

Kentucky State Capitol Rotunda
700 Capital Avenue
Frankfort, Kentucky

February 27, 2018 12:00 pm - 4:00 pm

February 27, 2018 at 12:00pm

Kentucky State Capitol, Rotunda, 700 Capital Avenue, Frankfort, KY 40601

The goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored.  This is an opportunity for patients, caregivers, medical professionals and industry representatives to come together and educate elected officials about rare diseases and what it’s like to live with or care for someone with a rare disease in the state. Register today!

Maine

Maine Rare Disease Day 2018

Welcome Center at Maine State House
210 State Street
Augusta, Maine

February 28, 2018 11:30 am - 12:30 pm

February 28, 2018 at 11:30am

Welcome Center at the Maine State House, 210 State Street, Augusta, Maine 04330

The goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored.  This is an opportunity for patients, caregivers, medical professionals and industry representatives to come together and educate elected officials about rare diseases and what it’s like to live with or care for someone with a rare disease in the state. Register today!

Maryland

2018 FDA Rare Disease Day

FDA
10903 New Hampshire Ave.
Silver Spring, Maryland

February 26, 2018 - March 02, 2018 All Day

FDA will have a web page dedicated to acknowledge the millions of patients facing unique medical challenges due to their rare disease. A series of videos from key FDA officials will highlight the advances in rare disease research, medical product development and approvals over the past year.

*this is a virtual event*

Rare Disease Day at NIH

National Institutes of Health Clinical Center
10 Center Drive
Bethesda, Maryland

March 01, 2018 8:00 am - 4:00 pm

Rare diseases affect an estimated 25 million people in the United States. On March 1, 2018, the National Institutes of Health (NIH) will host an event to raise awareness about these disorders, the people they affect, and current research collaborations.

Sponsored by NCATS and the NIH Clinical Center, Rare Disease Day at NIH will take place from 8:30 a.m. to 4:00 p.m. in Masur Auditorium on the NIH main campus in Bethesda, Maryland. The event will feature presentations, interactive panel discussions, posters, exhibits and tours of the NIH Clinical Center.

Admission is free and open to the public. In association with Global Genes®, participants are encouraged to wear their favorite pair of jeans. Be sure to follow the event on social media using #RDDNIH.

Prior to the event, on Feb. 23, 2018, NIH will host a Twitter chat on rare diseases from 1:00 to 2:00 p.m. ET. The chat will feature NIH Director Francis S. Collins, M.D., Ph.D., and NCATS Director Christopher P. Austin, M.D., as well as representatives from the rare diseases advocacy community. Join in the conversation via #NIHChat. Learn more at https://ncats.nih.gov/rdd and register at https://events-support.com/events/NIH_Rare_Disease_Day.

Rare Disease Day at NIH

National Institutes of Health Clinical Center
10 Center Drive
Bethesda, Maryland

March 01, 2018 8:30 am - 4:00 pm

Rare Disease Day at NIH

Rare diseases affect an estimated 25 million people in the United States. On March 1, 2018, the National Institutes of Health (NIH) will host an event to raise awareness about these diseases, the people they affect and current research collaborations.

Sponsored by the National Center for Advancing Translational Sciences and the NIH Clinical Center, Rare Disease Day at NIH will take place from 8:30 a.m. to 4:00 p.m. in Masur Auditorium on the NIH main campus in Bethesda, Maryland. The event will feature presentations, posters, exhibits, and tours of the NIH Clinical Center.

Admission is free and open to the public. In association with Global Genes®, participants are encouraged to wear their favorite pair of jeans. Be sure to follow the event on social media using #RDDNIH and don’t miss our Twitter chat on rare diseases on Feb. 23, 2018 from 1 to 2 p.m. ET with NIH Director Francis S. Collins, M.D.

2018 Maryland Day of Tuberous Sclerosis Complex Advocacy and Awareness

Maryland State Capitol Building
100 State Circle
Annapolis, Maryland

February 28, 2018 8:30 am - 1:00 pm

A day of TSC Advocacy, awareness and networking!  Meet with your Maryland elected officials on Rare Disease Day to raise awareness about Tuberous Sclerosis Complex and connect with other local Maryland TSC families.  Meetings will be between 9-10:00am.  TSC recognition on the Senate floor at 10:00am.  11:30 to 1:00pm will be an educational lunch featuring speakers Kari Luther Rosbeck, President and CEO, TS Alliance and Dr. Peter Crino, MD at University of MD TSC Clinic

Massachusetts

Massachusetts Rare Disease Day 2018

UMass Club
1 Beacon Street
Boston, Massachusetts

February 28, 2018 9:00 am - 12:30 pm

Please join Massachusetts Rare Action Network for Rare Disease Day in Boston on Wednesday, February 28, 2018 from 9:00am-12:30pm at the UMass Club at 1 Beacon Street, 32nd floor, Boston MA. This is an opportunity for patients, families, caregivers, medical professionals and industry representatives to come together and educate state legislators and their staff about rare diseases and the challenges patients and their families face in the state.  Contact one of your state ambassadors today for more information.

Registration is open, please spread the word—feel free to begin to tell colleagues, friends, partners to save the date for RDD 2018. This is one event where we open the doors wide—anyone who wants to show support for Rare Diseases is welcome to attend!

Register here!

Rare Disease Day at MCPHS University – Boston

White 300
179 Longwood Ave
Boston, Massachusetts

February 27, 2018 6:00 pm - 8:30 pm

Rare Disease Day Seminar

Northeastern University
120 Forsyth Street
Boston, Massachusetts

February 27, 2018 6:00 pm - 8:00 pm

Patients, healthcare advocates, and
researchers from Beth Israel Deaconess
Medical Center, Broad Institute, Clara
Health, and Rare New England will offer
their perspectives regarding rare disease. Hosted for Northeastern University students to learn more about rare disease, and how to
support the patients. Free dinner provided as well!

Michigan

Rare Disease Day Symposiu

Prince Conference Center
1800 E Beltline Ave SE
Grand Rapids, Michigan

March 03, 2018 8:30 am - 11:30 am

The goal of the Rare Disease Day symposium at Calvin College is to raise awareness about rare diseases and provide further education and resources for those affected by rare diseases and those interested in advocating for members of the rare disease community. It is our goal to connect members of the West Michigan rare disease community, including families, scientists, medical professionals, and students. The event is free and all are welcome to attend. Please register at: www.calvin.edu/go/rare-disease.

The schedule for the symposium will be as follows:

8:15        View Posters, Visit Resource Tables, Meet Attendees, Light Breakfast

8:45        Welcome – Dr. Baker and Dr. Wilstermann

8:50        Family Story: Usher Syndrome

9:15        Speaker: Dr. Paul Mark (Spectrum Medical Genetics, Bcs1-related Mitopathies)

9:40        Family Story: Complex III Deficiency

10:05     Coffee Break, Visit Posters, Visit Resource Tables

10:25     Speaker: Dr. Jeff MacKeigan (MSU, research)

10:50     Speaker: Dr. Kevin Timpe (Calvin College, advocacy)

11:15     Closing – Dr. Baker and Dr. Wilstermann

Michigan Rare Disease Day 2018

Michigan State Capitol, The Speaker's Library
100 North Capitol Avenue
Lansing, Michigan

March 08, 2018 11:00 am - 12:30 pm

March 8, 2018 at 11:00am

Michigan State Capitol, The Speaker’s library, 100 North Capitol Avenue, Lansing, MI 48933

The goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored.  This is an opportunity for patients, caregivers, medical professionals and industry representatives to come together and educate elected officials about rare diseases and what it’s like to live with or care for someone with a rare disease in the state. Register today!

Rare Disease Day 2018

Helen DeVos Children's Hospital
100 Michigan Street NE
Grand Rapids, Michigan

February 28, 2018 10:00 am - 11:00 am

 

Rare disease impacts West Michigan and the world.  A disease is rare when it affects less than 200,000 Americans at any one time.  Many are genetic and some remain undiagnosed.  Being touched by a rare disease can feel isolating as there is often little information available about these conditions.  Please join us for an informal gathering featuring a panel discussion of parents of children with rare diseases as we aim to raise awareness and bring hope and encouragement to patients and families affected by rare diseases.

Minnesota

Wear Something Rare for Rare Disease Day Happy Hour

LTD Brewing
8 8th Ave North
Hopkins, Minnesota

February 27, 2018 4:00 pm - 8:00 pm

Join Chloe’s Fight as we raise awareness and funds for the 1 in 10 Minnesotans affected by rare diseases. A portion of beverage purchases will go toward research and education. Wear a unique item of clothing so show your solidarity with the rare disease community. It’s like Halloween. In February. With science.

Minnesota Rare Disease Day 2018

Minnesota State Capitol
75 Reverend Dr. Martin Luther King Jr. Boulevard
Saint Paul, Minnesota

February 28, 2018 10:00 am - 12:00 pm

February 28, 2018 at 10:00am

Minnesota State Capitol, 75 Reverend Dr. Martin Luther King Jr. Boulevard, Saint Paul, MN 55155

The goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored.  This is an opportunity for patients, caregivers, medical professionals and industry representatives to come together and educate elected officials about rare diseases and what it’s like to live with or care for someone with a rare disease in the state. Register today!

Mississippi

Mississippi Rare Disease Day 2018

Mississippi State Capitol
400 High Street
Jackson, Mississippi

February 28, 2018 8:00 am - 11:00 am

February 28, 2018 at 8:00am

Mississippi State Capitol, 400 High Street, Jackson, Mississippi 39201

The goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored.  This is an opportunity for patients, caregivers, medical professionals and industry representatives to come together and educate elected officials about rare diseases and what it’s like to live with or care for someone with a rare disease in the state. Register today!

Nebraska

Nebraska Rare Disease Day 2018

Nebraska State Capitol
1445 K St
Lincoln, Nebraska

March 05, 2018 11:00 am - 12:00 pm

Join us on March 5 for a Signing Ceremony at 11:00 am in the Warner Chamber here at the Nebraska State Capitol! The Warner Chamber is located on the second floor of the Nebraska State Capitol across from the Rotunda from the Norris Legislative Chamber.

To RSVP please contact volunteer Neena Nizar at neenan@thejansensfoundation.org

Nevada

Dine & Rock Paint – ‘ROCKing Rare’

Truffles N Bacon Cafe
8872 South Eastern Ave, Suite 100
Las Vegas, Nevada

February 28, 2018 4:30 pm - 8:00 pm

This event is a family friend dining and rock painting event to support Rare Disease Awareness Day, but more importantly a rare disease called Alagille Syndrome.  During the event there will be a select menu handpicked by the amazing chef at Truffles N Bacon cafe. With each purchased meal an adult or child will be able to paint their own personalized rock as part of our ‘Rock Kindness for a Cure’ initiative.

In addition, there will be amazing raffle prizes from generous sponsors where 100% of the proceeds raised from these items will be donated to Alagille Syndrome Alliance.

More up to date details about this event will be shared on our Facebook page and Instagram so feel free to follow us!

For any other questions please email us at: rockkindnessforacure@gmail.com

 

 

New Hampshire

New Hampshire Rare Disease Day 2018

New Hampshire State House
107 North Main Street
Concord, New Hampshire

March 07, 2018 11:00 am - 2:00 pm

March 7, 2018 at 11:00am

New Hampshire State House, State House Dining Hall, 107 N Main Street, Concord, New Hampshire 03303

The goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored.  This is an opportunity for patients, caregivers, medical professionals and industry representatives to come together and educate elected officials about rare diseases and what it’s like to live with or care for someone with a rare disease in the state. Register today!

New Jersey

2018 Rare Disease Day Event in Trenton, New Jersey

The New Jersey State Museum
205 West State Street
Trenton, New Jersey

March 05, 2018 8:30 am - 3:30 pm

A Better World for People Living with Rare Diseases: State, National, and Global Action

TO REGISTER CLICK HERE

Sponsored by, BioNJ, HINJ and NORD

Takes place at the New Jersey Museum at 205 West State Street, in Trenton.

From 8:30 a.m. – 3:30 p.m. on March 5.

AGENDA: (Final Speakers and Times, subject to change)

8:30 – 9:00 Continental Breakfast and open networking.

9:00 – 9:05 Opening Remarks, Ellynn Szoke, NJ Rare Disease Alliance

9:05 – 9:55 Effective Advocacy Panel and Q&A – Real World Advice

  1. Michael Losow, Amicus Therapeutics, Moderator
  2. Sarah Balog Leukemia Lymphoma Society
  3. Bill Cummings, Rare Disease Advocate
  4. Stephanie Fischer, Rare Disease Patient Advocate
  5. Paul Melmeyer, NORD
  6. Rebecca Perkins, BioNJ
  7. Hemophilia Treatment Center/Distribution Company representative, TBD

9:55 – 10:00 Speaker Introduction by Dean J. Paranicas, President & CEO, HINJ

10:00 – 10:30 Keynote Speaker and Q&A Congressman Leonard Lance (R – NJ Dist. 7)

10:30 – 10:45 Break

10:45 – 10:50 Speaker Introduction by Debbie Hart, BioNJ President &CEO

10:50- 11:15 NJ Dept. of Health, Office of Commissioner and Q&A

11:15 – 12:00 Clinical Development Panel Discussion and Q&A, Panelists:

  1. Julie Raskin, CHI Executive Director, Moderator
  2. Susanne Fitch, M.B.A. Commercial Advisor Zealand Pharma
  3. Dominique Goodson, SCD Patient Advocate
  4. Anita Gupta, M.D. Anesthesiologist, Pain Management, Pharmacologist, Princeton U.
  5. Michelle Hall, EB Patient Advocate
  6. Katherine Lord, MD, CHOP
  7. John Maslowski, President and CEO, Fibrocell

12:00 – 12:30 Closing Remarks and Lunch, Ellynn Szoke, NJ Rare Disease Alliance

12:30 – 12:45 Walk to State House

12:45 – 3:30 State House Individual meetings with State Representatives

1st Annual Rare Disease Conference

St. Joseph's Children's Hospital
703 Main St.
Paterson, New Jersey

February 28, 2018 11:30 am - 2:00 pm

Join the worldwide campaign to raise awareness, learn, and recognize the rare disease community. Come hear stories from our patients and parents whose lives have been touched by a rare disease, meet our vendors and learn from our clinical team.

New York

New York Rare Disease Day 2018

New York State Capitol
State Street and Washington Avenue
Albany, New York

March 27, 2018 10:00 am - 2:00 pm

March 27, 2018 at 10:00am

New York State Capitol, State Street and Washington Avenue, Albany, New York 12224

The goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored.  This is an opportunity for patients, caregivers, medical professionals and industry representatives to come together and educate elected officials about rare diseases and what it’s like to live with or care for someone with a rare disease in the state. Register today!

Rare Disease Day Fashion Show

Monkey Girlz Treasures Consignment
565 Manor Rd
Staten Island, New York

February 28, 2018 6:00 pm - 8:00 pm

On Feb 28th at 6 pm Monkey Girlz Treasures Consignment (565 Manor Rd) and Eight Days Productions are teaming up with Midland Beach resident and rare disease patient and advocate Joanna Tierno to host a fashion show in honor of Rare Disease Day 2018. The main objective of Rare Disease Day 2018 is to raise awareness world wide with policy makers and the public of rare diseases and of their impact on the lives of patients, and to reinforce their importance as a public health priority. Joanna Tierno has been diagnosed with 3 rare diseases herself- two primary immune deficiency diseases and one rare skin condition. She relies on weekly infusions of immune globulin to live which is derived from blood plasma and she has been a model and patient spokesperson for New York Blood.

Face painting contest

Online, Social Media
703 east Main St
Jefferson Valley, New York

February 10, 2018 - February 28, 2018 12:00 am

We are running a Face Painting Contest to raise awareness for Rare Disease Day which takes place on February 28th this year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

We will provide (2) American Express Gift Cards as prizes. Everyone who participates will be entered into a drawing to receive a $100 Gift Card. The person who has the most likes/shares will win a $250 Gift Card.

Hashtag your photo #RareDiseaseDay18GraceDunne

https://www.facebook.com/zefcamaj/posts/10157088960504689

RARE DISEASE GENETICS: UNLOCKING INSIGHTS FOR ALL

New York Genome Center
101 Sixth Ave.
New York, New York

February 28, 2018 6:30 pm - 8:30 pm

Join us for a discussion with our scientist panel to learn more about: 

  • The widespread impact of rare diseases

(7,000 known rare diseases, 300 million worldwide affected, 50 percent of rare disease patients are children)

  • How next-generation sequencing has uncovered the genes responsible more than 50 percent of all rare diseases
  • How the genomic study of rare diseases has advanced the understanding of all diseases
  • How using cutting-edge methods to analyze genetic variants is responsible for rare

disease risks

 REGISTER

MODERATOR & SPEAKERS

Max Gomez, PhD, Medical Correspondent, CBS News

Co-Author, Cells are the New Cure: The Cutting-Edge Medical Breakthroughs That Are Transforming Our Health

Dr. Max Gomez, is a nine-time Emmy Award-winning medical correspondent with more than 30 years of broadcast experience. A highly regarded journalist, moderator and public speaker, Dr. Gomez has earned an outstanding reputation for translating complex medical topics into compelling stories. He has a special interest in genomics and aging, and is the co-author of the just released book, Cells are the New Cure: The Cutting-Edge Medical Breakthroughs That Are Transforming Our Health.

To learn more about Dr. Gomez, visit his website.

Tuuli Lappalainen, PhD, Core Faculty Member, New York Genome Center

Assistant Professor, Department of Systems Biology, Columbia University

Tuuli Lappalainen, PhD, is a Core Faculty Member at the New York Genome Center (NYGC). She holds a joint appointment as Assistant Professor in the Department of Systems Biology at Columbia University.

 

Dr. Lappalainen’s research focuses on functional genetic variation in human populations and its contribution to traits and diseases. She has pioneered the integration of large-scale genome and transcriptome sequencing data to understand how genetic variation affects gene expression, providing insight to cellular mechanisms underlying genetic risk for disease.

To learn more about Dr. Lappalainen’s research, visit her lab page.

Jean-Laurent Casanova, MD, PhD, Professor, St. Giles Laboratory of Human Genetics of Infectious Diseases, The Rockefeller University

Investigator, Howard Hughes Medical Institute

Dr. Casanova is a physician-scientist who studies the genetics of human predisposition to pediatric infectious diseases, particularly mycobacterial diseases, invasive pneumococcal diseases, and herpes simplex encephalitis. He is interested in identifying Mendelian “holes” in the immune defense of otherwise healthy children who are susceptible to specific infectious diseases, work that has resulted in a paradigm shift in human clinical medicine and fundamental immunology.

To learn more about Dr. Casanova’s research, visit his lab page.

Bruce D. Gelb, MD

Gogel Family Professor and Director, Mindich Child Health and Development Institute Professor, Pediatrics and Genetics and Genomic Sciences, Icahn School of Medicine at Mount Sinai

Dr. Bruce Gelb’s research focuses on using genetic approaches to understand the causes of cardiac defects. His group identified the first gene for Noonan syndrome (PTPN11) and has made several other gene discoveries for the RASopathies. The Gelb group continues to search for new RASopathy genes, to explore the biology of those disorders and to search for potential therapies for them.

 

To learn more about Dr. Gelb’s research, visit his lab page.

 

 

Rare Disease Day and Assembly at The Masters School

The Masters School
49 Clinton Ave.
Dobbs Ferry, New York

February 27, 2018 - February 28, 2018 All Day

My name is Grace Rosner,
I live in New York and am spearheading Rare Disease Day on February 28th at my school. I live with a form of Severe Chronic Neutropenia called Cyclic Neutropenia, which occurs in about 1 in 1,000,000 people. Together, with some other “rarities”, we are speaking about our high-school experiences and the ways our community could support us better. We are also holding two weeks of fundraising and activities for students!!

NJ

Rare Disease Day at Liberty Science Center

Liberty Science Center
222 Jersey City Blvd.
Jersey City, NJ

March 08, 2018 11:00 am - 5:00 pm

Ovid Therapeutics invites you to enjoy all the Liberty Science Center has to offer. Join us in celebrating Rare Disease Day and spending time with the rare community. Join us on March 4th for complimentary access, unique activities and passes to the incredible planetarium! RSVP: Friends@OvidRX.com

North Carolina

Re:Generation Hope

Power Plant Full Frame Auditorium
320 Blackwell St, Power Plant Bldg, Ste 100
American Tobacco, Downtown Durham, North Carolina

February 28, 2018 11:00 am - 12:00 pm

This Rare Disease Day, Enzyvant Therapeutics is celebrating the patients, families, and researchers who are at the core of complete DiGeorge Anomaly (cDGA) research. cDGA is a rare disease that causes severe, primary immunodeficiency and results in almost uniform death within the first 24 months of life if untreated. Thanks to the tenacity and hope of the cDGA community, transformative research is happening every day.

We invite you to follow us on Twitter (@Enzyvant) to learn more about cDGA and to watch the story of an amazing 12-year-old girl successfully treated over a decade ago at Duke with an investigational therapy. It’s stories like hers that inspired us to partner with Duke in 2016, and also one of the reasons we will always reach beyond to understand and serve our rare disease patient communities.

As part of our commitment to the cDGA patient community and to honor those who have and continue to contribute to transformative research, we are launching Re:GenerationHope on Rare Disease Day 2018. With every share of #ReGenerationHope on Twitter or Facebook, we will donate to primary immunodeficiency patient advocacy groups. Make sure to follow us for details so you can participate.

Ohio

Ohio Rare Disease Day 2018

Ohio State Capitol
1 Capitol Square
Columbus, Ohio

February 28, 2018 7:30 am - 3:00 pm

February 28, 2018

Breakfast at Lexi’s on Third

100 East Broad Street(Corner of Third and Broad Street), Columbus, OH 43215

7:30am-9:00am

Ohio State Capitol

1 Capitol Square, Columbus, OH 43215

9:30am-3:00pm

The goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored.  This is an opportunity for patients, caregivers, medical professionals and industry representatives to come together and educate elected officials about rare diseases and what it’s like to live with or care for someone with a rare disease in the state. CLICK HERE TO REGISTER TODAY!

OK

Rare Disease Day Proclamation signing Cherokee Nation of Oklahoma

Cherokee Nation Tribal Complex
17675 S Muskogee Ave
Tahlequah, OK

February 28, 2018 11:00 am - 12:00 pm

Cherokee Nation officials will be signing a proclamation declaring the last day in February as Rare Disease Day in the Cherokee Nation.

Oklahoma

Oklahoma Rare Disease Day 2018

Oklahoma State Capitol
2300 North Lincoln Boulevard
Oklahoma City, Oklahoma

April 25, 2018 9:00 am - 1:00 pm

April 25, 2018 at 9:00am

Oklahoma State Capitol, 2300 North Lincoln Boulevard, Oklahoma City, Oklahoma 73105

The goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored.  This is an opportunity for patients, caregivers, medical professionals and industry representatives to come together and educate elected officials about rare diseases and what it’s like to live with or care for someone with a rare disease in the state. Register today!

Pennsylvania

Teach One. Be One. Be a Champion for Rare Disease!

GBS|CIDP Foundation Headquarters
375 East Elm Street
Conshohocken, Pennsylvania

February 01, 2018 - February 28, 2018 12:00 am

This year the GBS|CIDP Foundation is encouraging people to join the RDD campaign on social media!  The campaign is Teach One. Be One. Simply, TEACH someone about GBS, CIDP or a variant of the condition, and BE a champion for rare disease! It’s just three easy steps to join the campaign and be a champion for rare:

  1. Teach someone about GBS|CIDP or a variant of the condition.
  2. Download and print the I AM A RARE CHAMPION sign.
  3. Take a photo or selfie and share on social media!

We are encouraging participants to tag their photo with #ShowYourRare, #Rarediseaseday #gbscidp and let the world know they CARE for RARE. Additionally we have created two patient RDD videos to promote the campaign and the cause. All information can be found at: https://www.gbs-cidp.org/rare-disease-day-2018/

Quebec

rareDIG Presents: Rare Disease Day 2018

McIntyre Medical Building, McGill University
3655 Promenade Sir-William-Osler
Montreal, Quebec

February 28, 2018 5:00 pm - 10:00 pm

McGill MSS Rare Disease Interest Group (rareDIG) presents our first big event for International Rare Disease Day 2018! Join us on February 28, 2018 at McGill University where we will be hosting a TED-style-like event featuring 5-6 inspiring speakers from the rare disease community. Our diverse speakers have firsthand experience treating rare disease patients, performing research on rare diseases, advocates in the community and/or are patients themselves. There will be great opportunities to network at the reception. This is an awareness event you do not want to miss!!

South Carolina

South Carolina Rare Disease Day 2018

South Carolina State Capitol
1100 Gervais Street
Columbia, South Carolina

February 28, 2018 9:00 am - 1:00 pm

February 28, 2018 at 9:00am

South Carolina State Capitol, 1100 Gervais St, Columbia, SC 29201

South Carolina Rare Action Network has partnered with Hemophilia of South Carolina (HSC) Advocacy Days event on Rare Disease Day! We will be joining HSC at the state capitol with an information table to educate passerby’s on rare diseases. We will also be coordinating some legislative visits while at the capitol. Register today!

South Dakota

Tennessee

GLOW for Galactosemia

Tyson Park
2351 Kingston Pike
Knoxville, Tennessee

March 04, 2018 4:00 pm - 8:30 pm

We are a race event (fun run for families, 5k/10k) raising awareness and funds for those affected by Galactosemia.

Our website has all the details @ www.glowforgalactosemia.com! We also have Facebook and Instagram pages!

Texas

Rare Disorder Day

The Health Museum
1515 Hermann Dr.
houston, Texas

February 28, 2018 9:00 am - 2:00 pm

Texas Rare Disease Day 2018

Law Firm of Osha Liang LLP
909 Fannin Street, Suite 3500
Houston, Texas

April 19, 2018 11:00 am - 1:00 pm

April 19, 2018 at 11:00am

Law firm of Osha Liang LLP, Two Houston Center, 909 Fannin Street, Suite 3500, Houston, Texas 77010

The goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored.  This is an opportunity for patients, caregivers, medical professionals and industry representatives to come together and educate elected officials about rare diseases and what it’s like to live with or care for someone with a rare disease in the state. Register today!

Utah

Utah Rare Disease Day 2018

Utah State Capitol
350 State Street
Salt Lake City, Utah

February 28, 2018 3:00 pm - 5:00 pm

February 28, 2018 at 3:00pm

Utah State Capitol, 350 State Street, Salt Lake City, Utah 84111

The goal of advocacy events is to draw attention to rare diseases as an important public health issue that cannot be ignored.  This is an opportunity for patients, caregivers, medical professionals and industry representatives to come together and educate elected officials about rare diseases and what it’s like to live with or care for someone with a rare disease in the state. Register today!

Virginia

Washington

Washington Rare Disease Day

Washington State University Spokane Campus, SAC 147
412 E Spokane Falls Blvd
Spokane, Washington

February 28, 2018 12:00 pm - 1:00 pm

Washington Rare Disease Day

February 28, 2018 at 12:00pm-1:00pm

Washington State University Spokane Campus, SAC 147

Limited tickets available
CLICK HERE to register today!

Agenda:

12:00pm Mary McDirmid, Washington Rare Action Network State Ambassador, Speaker, Momboss, Rare Patient Advocate

12:15pm Theresa Whitlock-Wild, ALS Advocate & Caregiver, Co-Founder of Matt’s Place Foundation

12:30pm K Michael Gibson, PhD Professor Pharmacotherapy Department, Rare Disease Researcher

12:45pm Ask Us Anything, Panel Discussion