Heading in to election season, it’s important that the rare disease community’s voice is heard at the state and federal levels. To ensure our continued success, RDLA has put together a collection of resources to help advocates register to vote, know where their representatives stand on rare disease-related issues, and know about ballot initiatives that […]
Thank you to the 600+ rare disease patients, caregivers, researchers and other advocates who joined us during Rare Disease Week on Capitol Hill 2018, which took place February 25th through March 1st. Click through for a full recap of the week’s events.
We know that traveling to Washington, DC isn’t on option for all advocates. In order to better serve the rare disease community, we’ve provided a number of ways for advocates to participate in Rare Disease Week on Capitol Hill remotely. Below are five ways you can make your voice heard during next week’s events.
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 […]
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 […]
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 […]
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 […]
