NATIONAL ALLIANCE

NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD) logo
NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)

United States


Rare Disease Day in United States


The USA joined Rare Disease Day in 2009, making the campaign a truly international affair. Diverse events and campaigns have been organised ever since then, and in 2013 President Barack Obama sent a letter proclaiming his support of the day.

Rare Disease 2020 saw a full programme of events and activities across the US aimed at raising awareness for those living with rare diseases. Ranging from educational conferences and symposia to fun runs to an art contest and exhibition championing the rare disease hand logo. Famous landmarks including the Empire State building were lit up in support of the campaign.

Find out about RareDisease Day in the US at https://rarediseases.org/rare-disease-day



NATIONAL ALLIANCE

NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD) logo
NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)

FRIENDS IN United States

Events in United States


14th Annual Rare Disease Day at KGI image
14th Annual Rare Disease Day at KGI

Hello, all! Come join the KGI community to help raise awareness for rare disorders at the NORD club’s 14th Annual Rare Disease...

05 Mar 2021 - Zoom(rsvp for link)

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New Jersey Rare Disease Day Virtual Event image
New Jersey Rare Disease Day Virtual Event

New Jersey Rare Action Network invites you to join patients, families, caregivers and other rare disease community members...

04 Mar 2021

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Focus on rare disease: Prime time — gene therapy for rare disorders image
Focus on rare disease: Prime time — gene therapy for rare disorders

Focus on rare disease: Prime time — gene therapy for rare disordersSixth annual seminar showcasing rare disease research.Wednesday,...

03 Mar 2021 - Cambridge

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Utah Rare Disease Day Virtual Event image
Utah Rare Disease Day Virtual Event

Utah Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this...

02 Mar 2021

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Maine Rare Disease Day Virtual Event image
Maine Rare Disease Day Virtual Event

Maine Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at...

01 Mar 2021 - 02 Mar 2021

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Rare Disease Day at NIH image
Rare Disease Day at NIH

Rare Disease Day at NIH aims to raise awareness about rare diseases, the people they affect, and NIH research collaborations...

01 Mar 2021 - Virtual

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The United States' Rare Disease Day Illuminations image
The United States' Rare Disease Day Illuminations

The following locations/landmarks in the United States will be illuminated to mark 2021 Rare Disease Day: - Niagara Falls,...

28 Feb 2021

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Delaware Rare Disease Day Virtual Event image
Delaware Rare Disease Day Virtual Event

Delaware Rare Action Network invites you to join patients, families, caregivers and other rare disease community members...

28 Feb 2021

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Texas Rare Disease Day Virtual Event image
Texas Rare Disease Day Virtual Event

Texas Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at...

28 Feb 2021

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3rd Annual GROW AWARENESS: VIRTUAL SHARE-A-THON image
3rd Annual GROW AWARENESS: VIRTUAL SHARE-A-THON

February 28th, 2021 is Rare Disease Day. Our group, RARE, will be hosting a 24 hour share-a-thon on the Clubhouse app on...

28 Feb 2021 - Worldwide

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Rare Disease Day At SkyView Atlanta image
Rare Disease Day At SkyView Atlanta

2/28/21 is #RareDiseaseDay2021 around the world  I partnered with SkyView Atlanta this year to host a family outing for our...

28 Feb 2021 - Atlanta

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Promoting Life Skills Through the Power of Cooking for RDD 2021 image
Promoting Life Skills Through the Power of Cooking for RDD 2021

“Baking is done out of love, to share with family and friends, to see them smile.”JOIN US! Let’s make chocolate chip cookies...

28 Feb 2021 - Online

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A Rare Disease and Mental Health Chat with David Ross, Chelsea Streit and special guest The Mata sisters from @Looms4Lupus image
A Rare Disease and Mental Health Chat with David Ross, Chelsea Streit and special guest The Mata sisters from @Looms4Lupus

A Rare Disease and Mental Health Chat with David Ross, Chelsea Streit and special guest The Mata sisters from @Looms4LupusThis...

28 Feb 2021 - Brighton and san francisco

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FMD Zebra's Unite image
FMD Zebra's Unite

The FMDSA would like to bring awareness to #RareDiseaseDay by inviting you to submit a picture wearing your favorite zebra...

28 Feb 2021 - North olmsted

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Raise Awareness for KLS in Times Square image
Raise Awareness for KLS in Times Square

The KLS Community has come together to spread awareness of Kleine-Levin Syndrome and Rare Disease. All members of the community...

28 Feb 2021 - Manhattan, new york

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Move2Advocate Pledge2Move image
Move2Advocate Pledge2Move

Move2Advocate, Pledge2Move VIRTUAL CELEBRATION!! On Rare Disease Day, Next Sunday February 28, 2021, will you move with...

28 Feb 2021

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Research for the CURE image
Research for the CURE

The Charlotte and Gwenyth Gray Foundation was founded in 2015 by Kristen and Gordon Gray when their oldest daughter Charlotte was...

28 Feb 2021 - 01 Mar 2021 - Los angeles

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Arkansas Rare Disease Day VIrtual Event image
Arkansas Rare Disease Day VIrtual Event

Arkansas Rare Action Network invites you to join patients, families, caregivers and other rare disease community members...

27 Feb 2021

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Louisiana Rare Disease Day Virtual Event image
Louisiana Rare Disease Day Virtual Event

Louisiana Rare Action Network invites you to join patients, families, caregivers and other rare disease community members...

27 Feb 2021

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Rare Disease Day Bay Area image
Rare Disease Day Bay Area

Rare Disease Day Bay Area is 2-day Livestream event on Twitch, featuring a Raid Train on Saturday and Sunday with over 30...

27 Feb 2021 - 28 Feb 2021 - Uk, toronto, nyc, chicago, las vegas, los angeles, bay area

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Lesch Nyhan Virtual Meeting image
Lesch Nyhan Virtual Meeting

For Rare Disease Day 2021, Boston Rare Connections is collaborating with the Chinese Organization for Rare Disorders to host...

27 Feb 2021 - 28 Feb 2021 - West roxbury

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Connecticut Rare Disease Day Virtual Event image
Connecticut Rare Disease Day Virtual Event

Connecticut Rare Action Network invites you to join patients, families, caregivers and other rare disease community members...

26 Feb 2021

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Florida Rare Disease Day Virtual Event image
Florida Rare Disease Day Virtual Event

Florida Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at...

26 Feb 2021

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Georgia Rare Disease Day Virtual Event image
Georgia Rare Disease Day Virtual Event

Georgia Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at...

26 Feb 2021

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Illinois Rare Disease Day Virtual Event image
Illinois Rare Disease Day Virtual Event

Illinois Rare Action Network invites you to join patients, families, caregivers and other rare disease community members...

26 Feb 2021

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South Carolina Rare Disease Day Virtual Event image
South Carolina Rare Disease Day Virtual Event

South Carolina Rare Action Network invites you to join patients, families, caregivers and other rare disease community members...

26 Feb 2021

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Tennessee Rare Disease Day Virtual Event image
Tennessee Rare Disease Day Virtual Event

Tennessee Rare Action Network invites you to join patients, families, caregivers and other rare disease community members...

26 Feb 2021

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See Rare Run Virtual Race image
See Rare Run Virtual Race

Welcome to the fourth SEE RARE RUN VIRTUAL RACE! This year, we have two distance options: 5K or 5 miler! SEE RARE RUN is...

26 Feb 2021 - 28 Feb 2021

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8th Annual Rare Disease Symposium image
8th Annual Rare Disease Symposium

Alabama Rare, Children's of Alabama, The University of Alabama at Birmingham, and the Alabama Genomic Health Initiative will...

26 Feb 2021 - 27 Feb 2021

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Oxford-Harrington Rare Disease Day Webinar image
Oxford-Harrington Rare Disease Day Webinar

Join us for a Rare Disease Day WebinarThe Oxford-Harrington Rare Disease Centre (OHC) is pleased to present a guest lecture...

26 Feb 2021

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Virtual Run for Rare image
Virtual Run for Rare

Firefly Fund is challenging you to Run for Rare starting on World Rare Disease Day, Feb. 28. Over the next month, we want...

26 Feb 2021 - 28 Feb 2021

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Healthcare and Advocacy Careers in Rare Diseases image
Healthcare and Advocacy Careers in Rare Diseases

The Mission San Jose High School Students For Rare Diseases Club is kick-starting the year with a Rare Disease Day Career...

26 Feb 2021

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Rare Disease Day at Iowa State University image
Rare Disease Day at Iowa State University

Rare Disease Day at Iowa State University is a completely virtual event hosted on Zoom by the ISU's Rare Disease Awareness...

25 Feb 2021 - Ames, iowa

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New York Rare Disease Day Virtual Event image
New York Rare Disease Day Virtual Event

New Jersey Rare Action Network invites you to join patients, families, caregivers and other rare disease community members...

25 Feb 2021

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Oklahoma Rare Disease Day Virtual Event image
Oklahoma Rare Disease Day Virtual Event

Oklahoma Rare Action Network invites you to join patients, families, caregivers and other rare disease community members...

25 Feb 2021

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Wisconsin Rare Disease Day Virtual Event image
Wisconsin Rare Disease Day Virtual Event

Wisconsin Rare Action Network invites you to join patients, families, caregivers and other rare disease community members...

25 Feb 2021

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Arizona Rare Disease Day Virtual Event image
Arizona Rare Disease Day Virtual Event

Arizona Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at...

24 Feb 2021

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Colorado Rare Disease Day Virtual Event image
Colorado Rare Disease Day Virtual Event

Colorado Rare Action Network invites you to join patients, families, caregivers and other rare disease community members...

24 Feb 2021

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Indiana Rare Disease Day Virtual Event image
Indiana Rare Disease Day Virtual Event

Indiana Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at...

24 Feb 2021

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Nevada Rare Disease Day Virtual Event image
Nevada Rare Disease Day Virtual Event

Nevada Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at...

24 Feb 2021

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New Hampshire Rare Disease Day Virtual Event image
New Hampshire Rare Disease Day Virtual Event

New Hampshire Rare Action Network invites you to join patients, families, caregivers and other rare disease community members...

24 Feb 2021

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Virginia Rare Disease Day Virtual Event image
Virginia Rare Disease Day Virtual Event

Virginia Rare Action Network invites you to join patients, families, caregivers and other rare disease community members...

24 Feb 2021

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Massachusetts Rare Disease Day Virtual Event image
Massachusetts Rare Disease Day Virtual Event

Massachusetts Rare Action Network invites you to join patients, families, caregivers and other rare disease community members...

24 Feb 2021

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Kansas Rare Disease Day Virtual Event image
Kansas Rare Disease Day Virtual Event

Kansas Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at...

24 Feb 2021

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Unlocking Rare Disease Treatments with Stem Cells image
Unlocking Rare Disease Treatments with Stem Cells

The NYSCF Research Institute's Live Conversations with ExpertsUnlocking Rare Disease Treatments with Stem CellsFebruary 24,...

24 Feb 2021

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North Carolina Rare Disease Day Virtual Event image
North Carolina Rare Disease Day Virtual Event

North Carolina Rare Action Network invites you to join patients, families, caregivers and other rare disease community members...

23 Feb 2021

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Ohio Rare Disease Day Event image
Ohio Rare Disease Day Event

Ohio Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this...

23 Feb 2021

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West Virginia Rare Disease Day Virtual Event image
West Virginia Rare Disease Day Virtual Event

West Virginia Rare Action Network invites you to join patients, families, caregivers and other rare disease community members...

23 Feb 2021

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Rare Disease Day Event image
Rare Disease Day Event

Join us online for a week of free events revolving around rare diseases and the rare disease community. Each evening of the...

23 Feb 2021 - 27 Feb 2021

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Rare Disease Day Celebration image
Rare Disease Day Celebration

We are interviewing our parents of children with rare diseases to bring awareness in our community. 

22 Feb 2021 - 28 Feb 2021 - Mandan

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California Rare Disease Day Virtual Event image
California Rare Disease Day Virtual Event

California Rare Action Network invites you to join patients, families, caregivers and other rare disease community members...

17 Feb 2021

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Bietti's Crystalline Dystrophy (BCD) Awareness Campaign image
Bietti's Crystalline Dystrophy (BCD) Awareness Campaign

Program: Launch a live monthly support call program for patients and families: https://invinciblevision.org/calls-sign-up/ Launch...

15 Feb 2021 - 31 Mar 2021

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Real Love, Rare Love in Texas image
Real Love, Rare Love in Texas

Love For Kids, Inc. is proud to honor children with rare conditions in partnership with musicians from Texas Music Network...

14 Feb 2021 - Ft. worth

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6th Annual Rare Disease Day virtual race image
6th Annual Rare Disease Day virtual race

This is our 6th year hosting the Rare Disease Day virtual race to raise awareness and to benefit the National Organization...

01 Feb 2021 - 28 Feb 2021

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Spreading MED13L Awareness Through Social Media image
Spreading MED13L Awareness Through Social Media

MED13L is a very rare syndrome that is characterized by intellectual disability, speech and language impairment, motor developmental...

01 Feb 2021 - 28 Feb 2021 - Barrington; philadelphia

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Zebra 5K image
Zebra 5K

Rare Disease Day may be the 28th, but we are celebrating all month. Join New Hope Run Club and Avery's Hope. Run, walk, roll...

01 Feb 2021 - 28 Feb 2021 - New hope

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Move For A Diagnosis + "$28 on the 28th" image
Move For A Diagnosis + "$28 on the 28th"

Announcing our “Move for A Diagnosis” event that will run throughout the month of February, until Rare Disease Day on the...

01 Feb 2021 - 28 Feb 2021

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