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.
https://rareadvocates.org/wp-content/uploads/2016/12/rare-disease-week-on-CH-logo-with-ribbon-1-1.png120370Stephanie Fischerhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngStephanie Fischer2017-02-23 13:17:512017-02-25 09:53:01How to Prepare for Success at Rare Disease Week on Capitol Hill
On January 23rd, President Trump instituted an immediate hiring freeze that would affect many federal agencies including the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). Unfortunately, this freeze could significantly hamper research into rare disease treatments as well as the review and approval of new medicines. The EveryLife Foundation for […]
https://rareadvocates.org/wp-content/uploads/2016/04/pencil-white.png270800Grant Kerberhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngGrant Kerber2017-02-15 20:11:222017-05-22 12:39:12The EveryLife Foundation seeks your support to end the NIH/FDA hiring freeze
Kids v Cancer has put together a yearbook summarizing the achievements of pediatric cancer advocacy organizations in 2016 and outlining steps that pediatric cancer organizations plan to take in 2017.
https://rareadvocates.org/wp-content/uploads/2017/02/image-2.png120320Grant Kerberhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngGrant Kerber2017-02-07 18:27:392017-05-22 12:40:12Kids v Cancer Creates Pediatric Cancer Legislative Yearbook for 2016
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.
How to Prepare for Success at Rare Disease Week on Capitol Hill
/in Featured, News, Rare Disease Week /by Stephanie FischerThere are a few things you can do to prepare to ensure a productive experience at Rare Disease Week at Capitol Hill and minimize last-minute stress.
The EveryLife Foundation seeks your support to end the NIH/FDA hiring freeze
/in Legislation, Take Action /by Grant KerberOn January 23rd, President Trump instituted an immediate hiring freeze that would affect many federal agencies including the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). Unfortunately, this freeze could significantly hamper research into rare disease treatments as well as the review and approval of new medicines. The EveryLife Foundation for […]
Kids v Cancer Creates Pediatric Cancer Legislative Yearbook for 2016
/in Advocacy Tools, Featured, Legislation, News, Policy Reports /by Grant KerberKids v Cancer has put together a yearbook summarizing the achievements of pediatric cancer advocacy organizations in 2016 and outlining steps that pediatric cancer organizations plan to take in 2017.