Thank you to all who attended and supported our sixth annual RareVoice Awards. You helped us celebrate rare disease advocates who made an impact at state and federal levels.
On November 30th, the House Energy and Commerce Committee held a hearing to discuss, “Implementing the 21st Century Cures Act: An Update from FDA and NIH.” A year after 21st Century Cures Act was signed into law, Members of Congress asked Francis Collins, Director, National Institutes of Health (NIH) and Scott Gottlieb, Commissioner, Food and Drug Administration (FDA) to provide updates.
https://rareadvocates.org/wp-content/uploads/2017/12/Cures.jpg120320Sabah Bhatnagarhttps://rareadvocates.org/wp-content/uploads/2020/01/RDLA-logo-with-tag-white-rev.pngSabah Bhatnagar2017-12-04 21:09:402017-12-05 11:28:4921st Century Cures Update: One Year Later
After President Trump announced his intention to scrap health insurance marketplace subsidies via executive order earlier this month, Senators Patty Murray (D-WA) and Lamar Alexander (R-TN) introduced a bipartisan bill entitled, “the Health Care Stabilization Act of 2017” in an attempt to stabilize the marketplace.
This week, we continue to introduce you to advocates nominated for RDLA’s 6th annual RareVoice Awards. The patient activists nominated in the “State Advocacy by a Patient Advocate” category worked to advance state policies that are beneficial for the rare disease community.
https://rareadvocates.org/wp-content/uploads/2014/09/RareVoice-Loge.png152293Sabah Bhatnagarhttps://rareadvocates.org/wp-content/uploads/2020/01/RDLA-logo-with-tag-white-rev.pngSabah Bhatnagar2017-11-03 15:37:202017-11-03 15:38:55Meet 2017’s RareVoice Nominees: State Advocacy by a Patient Advocate
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/2020/01/RDLA-logo-with-tag-white-rev.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/2020/01/RDLA-logo-with-tag-white-rev.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/2020/01/RDLA-logo-with-tag-white-rev.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/2020/01/RDLA-logo-with-tag-white-rev.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/2020/01/RDLA-logo-with-tag-white-rev.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/2020/01/RDLA-logo-with-tag-white-rev.pngSabah Bhatnagar2017-08-14 09:44:402017-08-14 09:49:00FDA User Fee Package Passes in the Senate, Awaiting President’s Signature
Scenes from a Successful RareVoice Awards Event
/in Featured, News /by Sabah BhatnagarThank you to all who attended and supported our sixth annual RareVoice Awards. You helped us celebrate rare disease advocates who made an impact at state and federal levels.
21st Century Cures Update: One Year Later
/in Featured, News /by Sabah BhatnagarOn November 30th, the House Energy and Commerce Committee held a hearing to discuss, “Implementing the 21st Century Cures Act: An Update from FDA and NIH.” A year after 21st Century Cures Act was signed into law, Members of Congress asked Francis Collins, Director, National Institutes of Health (NIH) and Scott Gottlieb, Commissioner, Food and Drug Administration (FDA) to provide updates.
Congress Mulls Healthcare Stabilization Efforts
/in Featured, News /by Sabah BhatnagarAfter President Trump announced his intention to scrap health insurance marketplace subsidies via executive order earlier this month, Senators Patty Murray (D-WA) and Lamar Alexander (R-TN) introduced a bipartisan bill entitled, “the Health Care Stabilization Act of 2017” in an attempt to stabilize the marketplace.
Meet 2017’s RareVoice Nominees: State Advocacy by a Patient Advocate
/in Featured, News /by Sabah BhatnagarThis week, we continue to introduce you to advocates nominated for RDLA’s 6th annual RareVoice Awards. The patient activists nominated in the “State Advocacy by a Patient Advocate” category worked to advance state policies that are beneficial for the rare disease community.
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.