The Dystrophic Epidermolysis Bullosa Research Association of America (debra of America) is seeking other patient advocacy organizations to sign-on in support of H.R. 1703, the Medical Product Communications Act of 2017. The letter of support is available here and any organization interested in signing can contact Joe Murray at firstname.lastname@example.org. The deadline to sign is close […]
About Grant Kerber
This author has yet to write their bio.Meanwhile lets just say that we are proud Grant Kerber contributed a whooping 32 entries.
Entries by Grant Kerber
From the EveryLife Foundation for Rare Diseases: Ask Your Representative to Co-Sponsor the OPEN ACT to Repurpose Drugs for Rare Disease Patients Take action to support the Orphan Product Extensions Now, Accelerating Cures and Treatments (OPEN ACT; HR 1223). The OPEN ACT could bring hundreds of safe, effective and affordable medicines to rare disease patients […]
From the National Organization for Rare Disorders: Tell Your Congressman to Please Vote NO on Revised AHCA Congress is currently reviewing the newest version of the American Health Care Act for a vote later this week, and we need your help. The new proposal (known as the MacArthur Amendment) could substantially roll back protections for […]
From the Coalition for Health Funding: Sign Letter in Support of Increased Funding for Labor, HHS, Education and Related Agencies Appropriations Attached for your consideration is a letter—being circulated throughout the health, education, child development, social services, and workforce communities—urging appropriators increase the allocation for the Labor, HHS, Education and Related Agencies Appropriations Subcommittee for […]
From the National Health Council (NHC) and National Organization for Rare Disorders (NORD): People with chronic and rare diseases and disabilities rely on FDA to access innovative, safe, and effective treatments. Not only do user fees provide the funding for FDA to quickly review products, but the current user fee agreements also provide significant improvements […]
From Research!America: Instead of completing work on an updated budget for Fiscal Year 2017 (FY17) before 2016 ended, Congress passed a temporary stop-gap or continuing resolution (CR) that flat-funds government until April 28, 2017. A draft FY17 “omnibus” spending bill that would direct more funding to National Institutes of Health (NIH) research and other key […]
From the National Organization for Rare Disorders (NORD) action alert: Federal lawmakers are currently considering a bill that intends to clarify regulations of employee wellness programs, but instead threatens our medical and genetic privacy. The Preserving Employee Wellness Programs Act (H.R. 1313) would exempt employee wellness programs from critical patient protections included in the Americans with Disabilities […]
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.
If you are not able to join us and advocates from across the country at Rare Disease Week on Capitol Hill on February 27th through March 2nd, you can still make your voice heard on Capitol Hill and participate in some of the programming.
The webinar will feature Michael Werner, Executive Director for ARM, as well as a representative from the U.S. Food and Drug Administration’s (FDA) Center for Biologics Evaluation and Research. Questions will be welcome.