Entries by Grant Kerber

RDLA and SmithSolve Launch Fast Forward for RARE

Earlier this year, hundreds of advocates representing every state gathered in Washington, DC for the Rare Disease Week Legislative Conference. Their energy and enthusiasm raised the roof, as they shared experiences and prepared to visit their legislators on Capitol Hill. What a difference a pandemic makes. We replaced our daily routines with the mostly quieter […]

900 Patients and Families Attend Rare Disease Week on Capitol Hill 2020

More than 900 patients and families from across the country attended Rare Disease Week on Capitol Hill 2020 from February 25th – 28th, an annual event hosted by the Rare Disease Legislative Advocates (RDLA). The Week featured events designed to educate and activate advocates and to foster relationships within the community. Advocates representing 227 patient […]

Rare Disease Legislative Advocates Honor Leaders Who Inspire Transformational Public Policy Solutions

(Washington, D.C., December 5, 2019) Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases (ELF), presented RareVoice Awards to individuals whose public policy advocacy leadership is saving lives and providing hope to millions of children and adults who live with rare diseases. RDLA is committed to growing the patient advocacy […]

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 […]