TheMighty published an editorial by Sharon Rose on the need for the rare disease community to advocate in support of the 21st Century Cures Act, and how the medical innovations offered by the legislation could provide improvements to the quality of life for rare disease patients.
About Grant Kerber
This author has yet to write their bio.Meanwhile lets just say that we are proud Grant Kerber contributed a whooping 326 entries.
Entries by Grant Kerber
Held every September, this Capitol Hill Day event continues the momentum established in 2013, and includes nearly 300 national organizations coming together in support of the Rally for Medical Research.
When Congress returns from their August recess, they will be considering how much funding to provide the National Institutes of Health — and the National Cancer Institute for 2017. As reported on the Children’s Cause Cancer Advocacy blog, a House Appropriations committee recently approved a spending bill that would increase NIH funding by $1.25 billion, while Senate […]
The Cambria Lord Foundation invites rare disease non-profits nationwide to join in their efforts to establish a National Emergency Treatment Database for rare disease patients. If your organization is interested in joining the coalition, visit their website here, or email firstname.lastname@example.org!
An editorial published by the Alliance for a Stronger FDA staff:
What do the opioid legislation, the Zika legislation and Cures/Innovations bills have in common, other than that they are “hot button” issues? In each case, Congress has done its best to seriously consider healthcare problems facing our nation and managed to find compromises in order to reach consensus. Also — significantly — the three pieces of legislation are stalled by funding issues.
RDLA hosted an informational webinar this morning on how you can get registered for the In-District Lobby Days and Legislative Conferences in Boston, Chicago and Seattle. These half-day conferences will include discussions with federal elected officials, academics, patient advocates and other rare disease stakeholders. They will also provide attendees with the opportunity to network and learn from others in the rare disease community.
Rare Disease Legislative Advocates in coordination with Rare Disease Congressional Caucus Co-Chairs: Representative Leonard Lance (R-NJ), Representative Joe Crowley (D-NY), Senator Orrin Hatch (R-UT), and Senator Amy Klobuchar (D-MN); and the Office of Senator Mark Kirk (R-IL) will host a briefing on: The NIH and FDA: Vital Agencies in the Fight Against Rare Diseases
The National Lymphedema Network is asking for help to pass the Lymphedema Treatment Act, S. 2373/H.R. 1608. This legislation seeks to improve coverage for lymphedema treatment by amending Medicare to cover compression supplies. Also supporting are the American Cancer Society, American Academy of Physical Medicine and Rehabilitation, Oncology Nursing Society, American Physical Therapy Association, and American […]
Research!America is asking YOUR organization to sign on to a letter thanking the Senate HELP Committee Chairman Lamar Alexander and Ranking Member Patty Murray for their efforts to advance the Senate Innovations legislative package. These efforts have included negotiating requested additions and changes, securing pay-fors to accommodate an NIH funding boost, and facilitating Senate consideration of […]
On behalf of of the Bipartisan Policy Center Advocacy Network, we are sharing this open letter to Congress from former Senate Majority Leader Bill Frist, M.D., former Congressman Bart Gordon, as well as patient, health care provider, research and biomedical industry organizations. The Senate Health, Education, Labor, and Pensions Committee passed a series of initiatives earlier this month […]