This week we are introducing you to the advocates nominated for RareVoice Awards in the “Federal Advocacy: Patient Advocate,” category. These individuals not only fought for legislation that helps rare disease patients, but also raised awareness about policy that impacts them within the community.
https://rareadvocates.org/wp-content/uploads/2017/06/RareVoice.png120120Sabah Bhatnagarhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngSabah Bhatnagar2017-10-20 15:50:552017-10-23 10:38:45Meet 2017’s RareVoice Nominees: Federal Advocacy by a Patient Advocate
The EveryLife Foundation will provide travel stipends ranging from $400 to $1000 to enable advocates from across the country to participate in Rare Disease Week on Capitol Hill, to be held from February 25th through March 1st, 2018. The deadline to apply is December 10th.
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 Fischer2017-10-10 19:03:392017-10-10 19:03:39Travel Stipend Applications Open for Rare Disease Week on Capitol Hill 2018
Congress has missed the September 30 deadline to renew funding for the Children’s Health Insurance Program (CHIP). CHIP is essential for families who do not qualify for Medicaid, but struggle to afford private insurance. A majority of states will deplete their CHIP dollars by March and some by December of this year.
https://rareadvocates.org/wp-content/uploads/2017/10/CHIP.1.jpg120320Sabah Bhatnagarhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngSabah Bhatnagar2017-10-01 20:01:202017-10-01 21:39:49Funding for CHIP Has Expired
In this series, we will be introducing you to rare disease advocates who made an impact at the state and federal level. These passionate teens are all nominated for RareVoice awards in the “Federal or State Advocacy by a Teenager” category.
https://rareadvocates.org/wp-content/uploads/2017/06/RareVoice.png120120Sabah Bhatnagarhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngSabah Bhatnagar2017-09-25 18:15:472017-09-26 10:49:55Meet 2017’s RareVoice Nominees: Federal or State Advocacy by a Teenager
Please join the more than 230 advocates who are meeting with their federal legislators during August recess by contacting your Members of Congress. It is easy to participate remotely, and you can do it on your own timeframe!
https://rareadvocates.org/wp-content/uploads/2016/06/idld2.png126140Stephanie Fischerhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngStephanie Fischer2017-08-23 22:56:532017-08-23 22:56:54Participate Remotely in In-District Lobby Days This Summer
The Senate has passed the Food and Drug Administration Reauthorization Act (FDARA), a legislative package that supplements FDA funding by requiring manufactures to pay user fees when submitting medical products for review in exchange for a timely approval process.
https://rareadvocates.org/wp-content/uploads/2017/08/FDA.jpg120320Sabah Bhatnagarhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngSabah Bhatnagar2017-08-14 09:44:402017-08-14 09:49:00FDA User Fee Package Passes in the Senate, Awaiting President's Signature
Join more than 300 hundred patient and physician advocacy organizations, universities, research centers and biopharmaceutical industry associations at the Rally for Medical Research on September 14th in Washington, DC to support sustained investment in the NIH.
https://rareadvocates.org/wp-content/uploads/2017/08/Rally_Vert.jpg110110Stephanie Fischerhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngStephanie Fischer2017-08-10 10:32:052017-08-10 10:32:05Rare Disease Advocates Invited to Join Rally for Medical Research on September 14th
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.
Meet 2017’s RareVoice Nominees: Federal Advocacy by a Patient Advocate
/in Featured, News /by Sabah BhatnagarThis week we are introducing you to the advocates nominated for RareVoice Awards in the “Federal Advocacy: Patient Advocate,” category. These individuals not only fought for legislation that helps rare disease patients, but also raised awareness about policy that impacts them within the community.
Travel Stipend Applications Open for Rare Disease Week on Capitol Hill 2018
/in Featured, News, Rare Disease Week /by Stephanie FischerThe EveryLife Foundation will provide travel stipends ranging from $400 to $1000 to enable advocates from across the country to participate in Rare Disease Week on Capitol Hill, to be held from February 25th through March 1st, 2018. The deadline to apply is December 10th.
Funding for CHIP Has Expired
/in Featured, News /by Sabah BhatnagarCongress has missed the September 30 deadline to renew funding for the Children’s Health Insurance Program (CHIP). CHIP is essential for families who do not qualify for Medicaid, but struggle to afford private insurance. A majority of states will deplete their CHIP dollars by March and some by December of this year.
Meet 2017’s RareVoice Nominees: Federal or State Advocacy by a Teenager
/in Featured, News /by Sabah BhatnagarIn this series, we will be introducing you to rare disease advocates who made an impact at the state and federal level. These passionate teens are all nominated for RareVoice awards in the “Federal or State Advocacy by a Teenager” category.
Participate Remotely in In-District Lobby Days This Summer
/in Events, Featured, In-District Lobby Days, News /by Stephanie FischerPlease join the more than 230 advocates who are meeting with their federal legislators during August recess by contacting your Members of Congress. It is easy to participate remotely, and you can do it on your own timeframe!
FDA User Fee Package Passes in the Senate, Awaiting President’s Signature
/in Featured, Legislation, News, Passed /by Sabah BhatnagarThe Senate has passed the Food and Drug Administration Reauthorization Act (FDARA), a legislative package that supplements FDA funding by requiring manufactures to pay user fees when submitting medical products for review in exchange for a timely approval process.
Rare Disease Advocates Invited to Join Rally for Medical Research on September 14th
/in Events, Featured, News /by Stephanie FischerJoin more than 300 hundred patient and physician advocacy organizations, universities, research centers and biopharmaceutical industry associations at the Rally for Medical Research on September 14th in Washington, DC to support sustained investment in the NIH.
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.