After the narrow defeat of Affordable Care Act replacement plans in the Senate, Senators have left for August recess without voting on other proposals. Sen. Alexander (R-TN), HELP Committee Chairman, along with Sen. Murray (D-WA), Ranking Minority, must bridge the chasm between viewpoints on opposite ends of the spectrum.
Sabah Bhatnagar recently joined the EveryLife Foundation team as Program Director of RDLA. She is a rare disease patient and is based in Washington, D.C.
https://rareadvocates.org/wp-content/uploads/2017/07/Sabah-e1499352083212.png110110Stephanie Fischerhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngStephanie Fischer2017-07-06 10:40:422017-08-09 13:01:23RDLA Welcomes Sabah Bhatnagar as Program Director
While the President makes a recommendation, it is up to Congress to pass funding bills. It is important for rare disease advocates to contact their legislators to request funding for the federal programs they support.
The EveryLife Foundation and Global Genes are joining together to host a series of free RARE on the Road events this summer to help rare disease patients, caregivers and other advocates to learn, grow and become independent activists for their rare disease community.
https://rareadvocates.org/wp-content/uploads/2017/04/rare-on-road-logo-final-264x300-1.png120320Stephanie Fischerhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngStephanie Fischer2017-04-10 17:52:452017-04-12 17:14:07EveryLife Foundation and Global Genes Unite to Present RARE on the Road in Atlanta, Kansas City and Portland
Facebook and Twitter provide opportunities to engage state and federal policymakers as well as other rare disease advocates who can take action on their own and/or increase the reach of your message.
https://rareadvocates.org/wp-content/uploads/2017/04/social-media-1.jpg120320Stephanie Fischerhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngStephanie Fischer2017-04-04 12:45:262018-01-31 18:18:42Utilizing Facebook and Twitter to Engage Policymakers is Key Part of Advocacy
Data in a new report illustrates that NIH research creates jobs across the country and helps make the case that funding should be increased, not decreased. According to United for Medical Research (UMR), research funded by NIH supported close to 380k jobs and $64.799 billion in economic activity in FY2016.
https://rareadvocates.org/wp-content/uploads/2017/03/NIH-logo-1.jpg120320Stephanie Fischerhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngStephanie Fischer2017-03-29 14:36:022017-04-03 14:08:17New Report on Economic Impact of NIH Research Helps Make Case for Increased Funding
The Rare Disease Congressional Caucus hosted a briefing during Rare Disease Week on Capitol Hill which focused on Advancing Rare Disease Treatments in the Era of Cures and Health Care Reform.
FasterCures, a non-profit think tank with the goal of speeding and improving the medical research system, recently debuted a new resource to track implementation of the 21st Century Cures Act.
https://rareadvocates.org/wp-content/uploads/2017/03/FasterCures-1.png120320Stephanie Fischerhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngStephanie Fischer2017-03-21 10:54:102017-04-03 14:09:03Free 21st Century Cures Tracker Available from FasterCures
PDUFA enables FDA to collect user fees from biopharmaceutical companies in order to enable the Agency to review the safety and efficacy of new medicines more quickly. It is important for PDUFA to be reauthorized by the end of July or FDA will not be able to accept the user fees and would need to send furlough notices to staff.
https://rareadvocates.org/wp-content/uploads/2015/08/fda.png110110Stephanie Fischerhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngStephanie Fischer2017-03-16 11:08:402017-03-16 11:21:43Congress Begins Process of Reauthorizing Prescription Drug User Fee Act
More than 600 rare disease patients, caregivers, researchers and other advocates joined us during Rare Disease Week on Capitol Hill in Washington, DC from Monday, February 27th, through Thursday, March 2nd.
Politico Article Explains What’s Next for Healthcare Reform
/in Featured, News /by Sabah BhatnagarAfter the narrow defeat of Affordable Care Act replacement plans in the Senate, Senators have left for August recess without voting on other proposals. Sen. Alexander (R-TN), HELP Committee Chairman, along with Sen. Murray (D-WA), Ranking Minority, must bridge the chasm between viewpoints on opposite ends of the spectrum.
RDLA Welcomes Sabah Bhatnagar as Program Director
/in Featured, Legislation, News, RDLA /by Stephanie FischerSabah Bhatnagar recently joined the EveryLife Foundation team as Program Director of RDLA. She is a rare disease patient and is based in Washington, D.C.
Trump Administration Releases Fiscal Year 2018 Budget Proposal
/in Events, Featured, Government Agencies, In-District Lobby Days, Legislation, News /by Stephanie FischerWhile the President makes a recommendation, it is up to Congress to pass funding bills. It is important for rare disease advocates to contact their legislators to request funding for the federal programs they support.
EveryLife Foundation and Global Genes Unite to Present RARE on the Road in Atlanta, Kansas City and Portland
/in Events, Featured, In-District Lobby Days, News /by Stephanie FischerThe EveryLife Foundation and Global Genes are joining together to host a series of free RARE on the Road events this summer to help rare disease patients, caregivers and other advocates to learn, grow and become independent activists for their rare disease community.
Utilizing Facebook and Twitter to Engage Policymakers is Key Part of Advocacy
/in Featured, Legislation, News, Rare Disease Week /by Stephanie FischerFacebook and Twitter provide opportunities to engage state and federal policymakers as well as other rare disease advocates who can take action on their own and/or increase the reach of your message.
New Report on Economic Impact of NIH Research Helps Make Case for Increased Funding
/in Government Agencies, Legislation, News, RDLA /by Stephanie FischerData in a new report illustrates that NIH research creates jobs across the country and helps make the case that funding should be increased, not decreased. According to United for Medical Research (UMR), research funded by NIH supported close to 380k jobs and $64.799 billion in economic activity in FY2016.
Rare Disease Congressional Caucus Briefing Videos Now Available
/in Caucus, Featured, Legislation, News, Rare Disease Week, RDLA /by Stephanie FischerThe Rare Disease Congressional Caucus hosted a briefing during Rare Disease Week on Capitol Hill which focused on Advancing Rare Disease Treatments in the Era of Cures and Health Care Reform.
Free 21st Century Cures Tracker Available from FasterCures
/in FDA, Featured, Government Agencies, Legislation, News /by Stephanie FischerFasterCures, a non-profit think tank with the goal of speeding and improving the medical research system, recently debuted a new resource to track implementation of the 21st Century Cures Act.
Congress Begins Process of Reauthorizing Prescription Drug User Fee Act
/in Featured, Government Agencies, Legislation, News /by Stephanie FischerPDUFA enables FDA to collect user fees from biopharmaceutical companies in order to enable the Agency to review the safety and efficacy of new medicines more quickly. It is important for PDUFA to be reauthorized by the end of July or FDA will not be able to accept the user fees and would need to send furlough notices to staff.
Rare Disease Week on Capitol Hill Engaged 600+ Advocates
/in Advocacy Tools, Campaigns/Coalitions, Events, Featured, Legislation, News, Rare Disease Week, RDLA, Uncategorized /by Stephanie FischerMore than 600 rare disease patients, caregivers, researchers and other advocates joined us during Rare Disease Week on Capitol Hill in Washington, DC from Monday, February 27th, through Thursday, March 2nd.