Entries by Grant Kerber

RDLA Announces Rebrand of In-District Lobby Days to Rare Across America

Rebrand reflects program’s evolution and commitment to the patient voice The Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, today announced the rebranding of its In-District Lobby Days program, which will now be called Rare Across America. The rebrand reflects the program’s evolution and reinforces the RDLA’s commitment to […]

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 […]