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 firstname.lastname@example.org.
We are so grateful to have been included on such a phenomenal project. The documentary, Undiagnosed: Medical Refugees, aims to raise awareness for undiagnosed patients and help bring about changes in our healthcare system to provide better care for patients on the journey to a rare diagnosis. The film is in post-production and expecting a 2016 release.
Austin, Texas represented Guillain–Barré syndrome (GBS), CADASIL (Cerebral Autosomal Dominant Arteriopathy with Sub-cortical Infarcts and Leukoencephalopathyand Myasthenia Gravis Disease during a walk held at Barton Creek Mall sponsored by MDA.
Awareness is Action"! Together, with collaboration of families and medical professionals, we will continue to make changes today to building this lasting foundation for tomorrow, providing a network of caring, the support your need to support your child. The good news is, FPIES families are not alone. Resources, tools and support, to overcome, to educate, encourage, empower, advocate, inspire,
Students in Health Science Class in Austin, Texas raised funds for Rare Disease Day 2014.
CADASIL Together We Have Hope Non-Profit has patients and families contact us about concerns. These concerns and issues are related any rare disease in the world.
Your most powerful contribution to The FPIES Foundation is your family's voice. Awareness is ACTION-- visit http://fpiesfoundation.org/start-the-conversation/ or contact The FPIES Foundation for ways that you and your family can help!
Be part of the Rare Disease Day Momentum- This Saturday February 28, 2015 Let's Walk Together to Bring People Living with Rare Diseases out of the Shadows and into the Spotlight.1 in 10 American is affected by a Rare Disease. Show the world how to live in solidarity Day-by-Day, Hand-in-Hand. Cannot attend no problem, please make an online Donantio
Events in United States
National Alliance representing United States
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.