United States

National Alliance
NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)
NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)
2016 events in United States
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. 

In 2016, events were as varied as they were widespread, with more than 35 states particpating and more than 80 events for Rare Disease Day! The increasingly important role of state policies and programs in assuring that the healthcare needs of the American public was addressed in the multiple events held in State Houses, taking place in many states such as Ohio, Viginia and Alambama and directly involving policy makers and legislators. Grassroots events were essential in involving the general public in raising awareness and from runway shows to chilli cook-offs they were a brilliant example of community support for people living with rare disease. 

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! Do you know of any events not listed here? Email us at rarediseaseday@eurordis.org.

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