Rare Disease Day, 2015

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On February 27, 2015, the National Institutes of Health (NIH) will celebrate the eighth annual Rare Disease Day with a day-long celebration and recognition of the various rare diseases research activities supported by the NCATS’ Office of Rare Diseases Research, the NIH Clinical Center, and other NIH Institutes and Centers; the Food and Drug Administration’s (FDA) Office of Orphan Product Development; other Federal Government agencies; the National Organization for Rare Disorders; the Genetic Alliance; Global Genes; and Uplifting Athletes. Rare Disease Day at NIH will be held in the Masur Auditorium (Clinical Center, Building 10) from 8:30 a.m. to 5:00 p.m. Attendance is free and open to the public.

Rare Disease Day at NIH is appropriate for patients and patient advocates, health care providers, researchers, industry representatives, and government employees. We will have talks from academic and government scientists, industry representatives, and the lay community.

In addition to the various scheduled talks (see agenda), posters and exhibits from many groups relevant to the rare diseases research community will be displayed. In association with Global Genes, we again encourage all attendees to wear their favorite pair of jeans.

The Rare Disease Day 2015 event will also be webcast and Clinical Center tours will be available for in-person attendees.

Register Here.

 

Rare Disease Week, 2014

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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 will be coming soon.

Tuesday, February 25th:
8:15 am – 4:30 pm Legislative Conference 
National Press Club, 529 14th Street NW, Washington, DC

5:30 pm – 9:30 pm 4th Annual Rare Disease Day Documentary Screening & Cocktail Reception
Carnegie Institution of Science, 1530 P Street Northwest, Washington DC

Wednesday, February 26th:
7:00am -8:30 am Lobby Training Breakfast
Top of the Hill, Reserve Officers Association, One Constitution Avenue, NE, Washington DC

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

Thursday, February 27th
9:00 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

TBD, Rare Disease Congressional Caucus Briefing

Friday, February 28th:
RDD@NIH Rare Disease Day at the National Institutes of Health – 2014 event information & registration coming soon

All events are free and open to the public, registration coming soon.

Hotel Room Block: Dupont Circle, on the Red Metro line:
Embassy Row Hotel2015 Massachusetts Ave, NW, Washington DC
$149/night single $169/night double + 14% DC Tax    Click Here to book your hotel ! or Call (202) 939-4208 & ask for the EveryLife Foundation Room Block
Complimentary internet in guest rooms, Complimentary breakfast
There are a limited number of rooms available at the discounted rate.  Discounted rates expire on Monday, February 3rd.

Click Here to watch the video presentations from last year’s Legislative Conference 

If you can’t join us in DC, please stay tuned for ways to share your personal story with Congress.