Rare Disease Week on Capitol Hill Was a Huge Success!

Thanks for playing your part in such a monumental week! Over the next few months we will start to see the positive outcomes of all our hard work, as rare disease legislation makes its way through The Congress.



What is Rare Disease Week on Capitol Hill?

We are proud to bring together members of the rare disease community from across the country to share their unique stories, ideas, and make our collective voice heard on Capitol Hill.

The large presence of dedicated advocates helped to make this event a great success. Their enthusiasm and positive spirit helped make Rare Disease Week 2015 both productive and fun.

Help spread the word with advocates that weren’t able to make our conference by writing blog posts and testimonials, and sharing photos on social media. Also, we are pleased to have presentations and photos from this year’s conference available on our website soon, so stay tuned and stay engaged with RDLA.

Throughout the year we have opportunities for advocates to learn about the most recent Rare Disease Legislation (monthly webinars), meet with their representatives (In-District Lobby Days), and celebrate those who have raised the profile and voice of the rare disease community (RareVoice Awards).


View presentations and photos from this year’s Rare Disease Legislative Conference and all the other events below!

All the photos taken at the Legislative Conference can be viewed here: at our Facebook page!



Monday, February 23rd

Rare Disease Documentary Screening and Cocktail Reception
@ Carnegie Institution for Science

Documentary Screening featuring the film “RARE”rarefilm.org presented byOnyxPharmaceuticals-200x80

Doc Screening 2015

View photos from the Documentary Screening to kick off Rare Disease Week!



Tuesday, February 24th

Legislative Conference
@ FHI 360

Click here to see the 2015 Legislative Conference Agenda



Wednesday, February 25th

Lobby Day Breakfast
@ Women’s Democratic Club

Rare Disease Lobby Day
@ U.S. Senate and House Office Buildings
9:00 am – 5:00 pm Meetings with your elected officials



Thursday, February 26th

Rare Disease Congressional Caucus Briefing
@ U.S. Capitol Visitor Center
12:00 pm – 1:00 pm


Rare Artist Reception
Rayburn Foyer
5:00 pm – 7:00 pm

Lance Rare Artist

Click here to see more photos of the RareArtist event



Friday, February 27th

Rare Disease Day NIH logo

Rare Disease Day at the NIH
@ NIH Campus

NIH event

Advocates: Please take a moment to fill out our quick survey regarding your conference experience. Your feedback is critical in our ongoing effort to improve this annual event. Thank you again for being part of such a wonderful conference experience!




Thank you to our sponsors:

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