US Congress Hears About NGLY1


On Tuesday, July 22, 2014, at 3:00 p.m. in 2322 Rayburn House Office Building, the Subcommittee on Health held a hearing entitled “21st Century Cures: Examining Barriers to Ongoing Evidence Development and Communication.” This hearing focused on issues surrounding continued evidence development and communication of […]

Rare Disease Congressional Caucus Briefing Action Alert

Rare Disease Congressional Caucus Briefing, November 14, 2012 with RDLA, National Health Council and Shire

On Wednesday, November 14, RDLA, National Health Council, and Shire, in coordination with Rare Disease Caucus Co-Chairs Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY) will be participating in a briefing to discuss next steps for rare disease policy. Help ensure the Rare Disease Caucus Briefing is a success! How can you help? By following […]

We Need Congress to Reach an Agreement to Protect NIH & FDA from Funding Cuts

Please contact your Members of Congress and urge them to protect funding for the Food & Drug Administration & National Institutes of Health!

The election is over, and the status-quo remains. Republicans remain in control of the House of Representatives, while Democrats retain control of the Senate and White House. When Congress returns to work next week for the lame duck session, they must act quickly to protect […]

Rare Disease Legislative Advocates to Host Legislative Conference and Lobby Day during Rare Disease Day/Week

Rare Disease Legislative Advocates (RDLA) announce registration for their legislative conference and lobby day - now open to the public.

Join RDLA and 200 rare disease advocates in Washington, DC for Rare Disease Day – Week, February 26th – 27th 2013. The Conference and Lobby Day are free and open to the public.  Click Here to Register Today! Need financial assistance to help cover your travel costs?  Click […]

RareVoice Awards Gala Hosted by the Rare Disease Legislative Advocates Seeks Nominations for Patient Advocates and Congress Staff/Members

Rare Disease Legislative Advocates (RDLA) hosts the RareVoice Gala Awards November 14, 2012

Nominations are Open: HERE Deadline for Nomination Submission is Friday, Sept. 21st 5pm PDT On November 14, 2012, RDLA will host its inaugural RareVoice Awards Gala to honor and thank Members of Congress, Congressional Staff and Patient Advocates for their advocacy to ensure The Food and Drug Administration Safety and […]

Rare Disease Language included in House draft PDUFA Bill


RARE Project would like you to consider taking action in support of the new language (FAST Act) related to the Prescription Drug User Fee Act (PDUFA) in the following ways.  The more support there is for the FAST Act, the better positioned the rare community […]

The Grassroots Movement Behind Ultra and Fast: Join the Movement!


A Guest Blog by Julia Jenkins: Director of Government Relations, EveryLife Foundation   The Grassroots Movement Behind ULTRA-FAST & How you can join the Movement! We are very excited to share the news that rare disease Accelerated Approval language made it into the House draft […]