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Rare Disease Dayin United States

The USA joined Rare Disease Day in 2009 with participation from NORD, the National Organization for Rare Disorders, making the campaign a truly international affair. Diverse events and campaigns have been organised since then, including a collection of photographs with the Rare Disease logo across the USA, “Handprints across America”, and educational programmes in schools. In 2013 President Barack Obama sent a letter proclaiming his support of the day. Fundraising efforts continued in 2014, in adition to a number of seminars and state house events.

NORD, the National Organization for Rare Disorders, is committed to the identification, treatment, and cure of rare diseases through programmes of education, advocacy, research and patient services.  They can be contacted directly to help you find a patient organisation locally which may have more information about a specific rare disease or disorder. Find their contact information on the bottom of this page. 

You can also get involved! Write to us at rarediseaseday@eurordis.org.

flag of the country of the association Stewartville, United States, 01 Feb 2015 - 28 Feb 2015

Living with a Rare Diagnosis: FPIES Living with a Rare Diagnosis: FPIES

flag of the country of the association Global, United States, 01 Feb 2015 - 28 Feb 2015

FPIES: Living with a Rare Diagnosis FPIES: Living with a Rare Diagnosis

flag of the country of the association Gloucester City, New Jersey, United States, 09 Feb 2015

Crate Expectations Crate Expectations

flag of the country of the association Notre Dame, Indiana 46556, United States, 13 Feb 2015 - 14 Feb 2015

Rare Disease Day Celebration Rare Disease Day Celebration

flag of the country of the association Bulverde, United States, 17 Feb 2015

Living with a Rare Disease TweetChat Living with a Rare Disease TweetChat

flag of the country of the association Hamilton Township, New Jersey 08619, United States, 21 Feb 2015 - 22 Feb 2015

Rare Disease Awareness Weekend Rare Disease Awareness Weekend

flag of the country of the association Rogers Elementary School, St. Louis, Missouri, United States, 23 Feb 2015 - 27 Feb 2015

Awareness for Wolfram syndrome Awareness for Wolfram syndrome

flag of the country of the association Sacramento, United States, 23 Feb 2015

Rare Disease Lecture Rare Disease Lecture

flag of the country of the association Farmington, Connecticut, United States, 25 Feb 2015

Rare Disease Awareness Event 2015 Rare Disease Awareness Event 2015

flag of the country of the association Concord, California 94521, United States, 25 Feb 2015

Rare Disease Education Day & Service Learning Rare Disease Education Day & Service Learning

flag of the country of the association United States, 26 Feb 2015

Rare Disease Tweet Chat Rare Disease Tweet Chat

flag of the country of the association Sioux Falls, South Dakota, United States, 27 Feb 2015

5th Annual Sanford Rare Disease Symposium 5th Annual Sanford Rare Disease Symposium

flag of the country of the association 1600 Rockland Road, Wilmington, Delaware 19803, United States, 27 Feb 2015

Nemours Rare and Chronic Disease Research Event Nemours Rare and Chronic Disease Research Event

flag of the country of the association San Diego, CA, USA, United States, 27 Feb 2015 - 28 Feb 2015

Treating Disease with Sugars Treating Disease with Sugars

flag of the country of the association La Jolla, United States, 27 Feb 2015 - 28 Feb 2015

Treating Disease with Sugar Treating Disease with Sugar

flag of the country of the association Chicago, United States, 27 Feb 2015

ROCK Rare Disease ROCK Rare Disease

flag of the country of the association Hialeah Gardens, Florida, United States, 28 Feb 2015

Walk Against Rare Diseases Walk Against Rare Diseases

flag of the country of the association La Jolla, California, United States, 28 Feb 2015

6th Annual Sanford-Burnham Rare Disease Day Symposium: Doctor-Is-In-Session 6th Annual Sanford-Burnham Rare Disease Day Symposium: Doctor-Is-In-Session

flag of the country of the association Austin, Texas, United States, 28 Feb 2015

The Sugar Shindig The Sugar Shindig

flag of the country of the association Lake Ronkonkoma, New York 11779, United States, 28 Feb 2015

Painting for a Cause Painting for a Cause

flag of the country of the association Harrison Township, Michigan, United States, 28 Feb 2015

Rare Disease Day Mystery Dinner Rare Disease Day Mystery Dinner

flag of the country of the association Austin, United States, 28 Feb 2015

Rare Disease Day Austin State Capitol Rare Disease Day Austin State Capitol

flag of the country of the association Harrison Township, United States, 28 Feb 2015

Rare Disease Day Mystery Dinner Rare Disease Day Mystery Dinner

flag of the country of the association New York, United States, 28 Feb 2015

#EBawareness for Epidermolysis Bullosa #EBawareness for Epidermolysis Bullosa

flag of the country of the association La Jolla, California, United States, 28 Feb 2015

FREE CME/CNE Activity: 'The Lung in Sclerodoma' FREE CME/CNE Activity: 'The Lung in Sclerodoma'

flag of the country of the association Kitty Hawk, United States, 28 Feb 2015

Raise and Join Hands OBX Raise and Join Hands OBX

flag of the country of the association Chicago, United States, 28 Feb 2015

Rare Gems for Rare Diseases Rare Gems for Rare Diseases

flag of the country of the association Hialeah Gardens, FL, United States, 28 Feb 2015

Walk Against Rare Diseases Walk Against Rare Diseases

flag of the country of the association Austin, United States, 28 Feb 2015

The Rundown for Rare Disease The Rundown for Rare Disease

flag of the country of the association Bronx, New York 10461-0000, United States, 02 Mar 2015

Rare Disease Day: Lysosomal Storage Disorders Rare Disease Day: Lysosomal Storage Disorders

flag of the country of the association Royersford, PA, United States, 12 Mar 2015

Fundraiser Dinner at Texas Roadhouse Fundraiser Dinner at Texas Roadhouse

flag of the country of the association Birmingham, Alabama 35233, United States, 16 Mar 2015

UAB Genetics and Children's of Alabama Rare Disease Day UAB Genetics and Children's of Alabama Rare Disease Day

National Alliance representing United States

logo of the organisation

NORD, the National Organization for Rare Disorders, joined Rare Disease Day in 2009 as the official US sponsor of the day. In 2013, President Barack Obama sent a letter proclaiming his support of the day.

NORD provides a press-kit, hosts a gallery of photographs with the rare disease logo across the USA, “Handprints across America”, provides educational materials to bring Rare Disease Day into schools, and hosts state house events across the country.  Learn about these and other ways that you can get involved at rarediseaseday.us.

NORD is committed to the identification, treatment, and cure of rare diseases through programs of education, advocacy, research and patient services.

 

Friends of Rare Disease Day in United States

What is a Friend of Rare Disease Day and how can you become one?