Rare Disease Day – Week Washington, 2014

You are invited to join RDLA and 200 rare disease advocates in Washington, DC for Rare Disease Day (Week), February 25 – 28, 2013. Below is an overview of the events, registration information will be posted as it opens.

Tuesday, February 25th:

8:15 am – 4:30 pm Legislative Conference, National Press Club, 529 14th Street NW, Washington, DC (near Metro Center)

5:30 pm – 9:30 pm RDLA’s 4th Annual Rare Disease Day Documentary Screening & Cocktail Reception, Carnegie Institution of Science, 1530 P Street Northwest, Washington DC (near Dupont Circle)

Wednesday, February 26th:

7:00am -8:30 am Lobby Training Breakfast, Top of the Hill, Reserve Officers Association, One Constitution Avenue, NE, Washington DC (Near Capitol Hill)

9:00 am – 5 pm Capitol Hill Meetings with Members of Congress & Congressional Staff

Thursday, February 27th:

8:00 – 10:30 am EveryLife Foundation for Rare Diseases Workshop on FDA Regulatory Law & Policy for Patient Advocates

Embassy of Greece, 2217 Massachusetts Ave NW, Washington DC 20008 (near Dupont Circle)

10:00 am – 5 pm State Delegation Hill Meetings (Optional) Advocates drop by Congressional Offices and attend meetings on behalf of advocates who are too sick or unable to come to DC

Friday, February 28th:

[email protected] Rare Disease Day at the National Institutes of Health

NIH Campus, Natcher Auditorium (Building 45), Bethesda, Maryland (10 miles from DC) – more information & registration will be available in early Dec.

 

All events are free and open to the public.

Contacts:

Rare Disease Legislative Advocates

750 9th Street, NW, Suite 750 • Washington, DC • 20001

Office: (202) 803-6047 • Fax: 415-884-0562

[email protected]