Entries by Grant Kerber

CAL Rare Asks California Residents to Have Their State Representatives Join the Rare Disease California Caucus

The EveryLife Foundation and CAL Rare are urging California advocates to have their state representatives join the Rare Disease California Caucus.  The bipartisan Rare Disease California Caucus is led by Assemblymember and Health Committee Member Rob Bonta (D-Oakland) and Assemblymember and Health Committee Vice Chair Brian Maienschein (R-San Diego) to promote awareness of rare disease […]

EveryLife Foundation Asks Advocates to Have Their Members of Congress Co-Sponsor the OPEN ACT

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 […]

Debra of America Shares Sign-On Letter for H.R. 1703, the Medical Product Communications Act of 2017

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 joe@debra.org. The deadline to sign is close […]

Coalition for Health Funding Asks Orgs to Sign-On for Additional HHS Funding

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 […]

NHC and NORD Share PDUFA Sign-On Letter

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 […]

Research!America Urges Congress to Pass FY2017 Budget

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 […]

NORD Asks Congress to Keep Medical and Genetic Privacy Protections Intact

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 […]