World Rare Disease Day is a time when the global community comes together in unity, to build voice, awareness and support for the hundreds of millions of patients and their families affected by rare disease.
The Global Genes Project™ is a campaign sponsored by the RARE Project helping individuals and organizations to participate in this annual Day Of Unity.
Click here to get involved, show your support, find resources, and for ideas on how you can help raise RARE Disease Awareness on World RARE Disease Day.
Day on the Hill Events
Rare Disease Lobby Day on Tuesday, February 28, 2012
Lobby Training Breakfast
7:30a.m. – 9:30a.m. Darlington House
1610 20th ST NW Washington DC
Learn about the Rare Disease Congressional Caucus and legislation to help spur the development of treatments for rare disease patients, including the ULTRA Act and Creating Hope Act
Hill Meetings with your Representatives
10:00a.m. – 5:00p.m. on Capitol Hill
Transportation will be provided from the Darlington House to Capitol Hill
Each advocate will be scheduled for at least three meetingsHappy Hour Lobby Day Celebration
5:30p.m. – 7:00p.m.
Darlington House 1610 20th ST NW Washington DC
Join us to share your meeting experiences and feedback from Congress
The happy hour includes appetizers & a no host barWednesday, February 29, 2012
Rare Disease Day at NIH (RDD@NIH)
Clinical Center’s Masur Auditorium, 9000 Rockville Pike, Building 10, Bethesda, MD
The National Institutes of Health (NIH) will celebrate the fifth annual Rare Disease Day with a day-long celebration. Attendance is free, open to the public and will be webcasted.Take a LEAP for Complex Illness
8pm at the Dunes 1402 Meridian Place NW, Washington, DC
Featuring performances by Jonny Grave & the Tombstones, Benny, & Nelly Kate.
To benefit MarbleRoad a 501c3 non-profit: connecting people who have complex illnesses with resources to improve their lives.Thursday, March 1, 2012
FDA Rare Disease Patient Advocacy Day
White Oak Campus, 10903 New Hampshire Ave, Silver Spring, MD
The Food and Drug Administration (FDA) will celebrate the fifth annual Rare Disease Day by hosting a “FDA Rare Disease Patient Advocacy Day” to engage and educate the rare disease community on regulatory processes related to rare diseases. Attendance is free. Registration is required. The event will be webcasted
Please also join the discussion at www.rarediseaseday.org or www.rarediseaseday.eu.
For questions related to Global Genes Project and World Rare Disease Day activities, please contact Amyg@rareproject.org.
