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Tag: Congress

A total of 16 posts are filed under Congress
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Pulmonary Hypertension Patients Sending Video Selfies to Congress!
Patients are PHighting back and going straight to congress to do so! Individuals impacted by pulmonary hypertension (PH), a rare,… Continue Reading
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… Continue Reading
Rare Disease Congressional Caucus Briefing, November 14, 2012 with RDLA, National Health Council and Shire
Rare Disease Congressional Caucus Briefing Action Alert
On Wednesday, November 14, RDLA, National Health Council, and Shire, in coordination with Rare Disease Caucus… Continue Reading
Please contact your Members of Congress and urge them to protect funding for the Food & Drug Administration & National Institutes of Health!
We Need Congress to Reach an Agreement to Protect NIH & FDA from Funding Cuts
The election is over, and the status-quo remains. Republicans remain in control of the House of Representatives, while Democrats retain… Continue Reading
Rare Disease Legislative Advocates (RDLA) announce registration for their legislative conference and lobby day - now open to the public.
Rare Disease Legislative Advocates to Host Legislative Conference and Lobby Day during Rare Disease Day/Week
Join RDLA and 200 rare disease advocates in Washington, DC for Rare Disease Day – Week, February 26th – 27th 2013. The Conference and… Continue Reading
Rare Disease Legislative Advocates (RDLA) hosts the RareVoice Gala Awards November 14, 2012
RareVoice Awards Gala Hosted by the Rare Disease Legislative Advocates Seeks Nominations for Patient Advocates and Congress Staff/Members
Nominations are Open: HERE Deadline for Nomination Submission is Friday, Sept. 21st 5pm PDT On November 14, 2012, RDLA will host… Continue Reading
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… Continue Reading