Entries by

Youth Advocacy during Rare Disease Week on Capitol Hill

 As our Foundation continues to build its youth advocacy programming, we are pleased to offer a dedicated youth advocacy track for our 2018 Legislative Conference.  This programming track echoes our belief that it is important for young adults to have their own voice when advocating for issues affecting the rare disease community, and aims to grow that voice to build confidence, develop political leadership skills and raise awareness.

The National Leiomyosarcoma Foundation is Asking Patient Advocates to Call Their Members of Congress in Support of Resolution Establishing National Sarcoma Awareness Month

The National Leiomyosarcoma Foundation is asking patient advocates to call their Members of Congress in support of a resolution to create a National Sarcoma Awareness Month and a National Leiomyosarcoma Awareness Day in 2018.  A National Sarcoma Awareness Month for JULY would allow awareness and support on a national scale. Leiomyosarcoma Awareness Day-July 15 was […]

CHIP Funding Extended for Six Years

Earlier this month, Congress passed a Continuing Resolution (CR) extending Children’s Health Insurance Program (CHIP) funding for 6 years. The program provides affordable, comprehensive health insurance for children in families with too much income to qualify for Medicaid, but struggle to afford private insurance. Some states had to temporarily close enrollment or post notices about coverage loss after CHIP expired on September 30, 2017.

January 24: Monthly Legislative Meeting

RDLA’s January Legislative Webinar Wednesday, January 14th, 2018 12:00 – 1:00 pm ET Expanded Carrier Screening, Jennifer Smith MD, Fellow of the American College of Obstetricians and Gynecologists, Consultants in Women’s Healthcare The Senate Health, Education, Labor and Pensions (HELP) Committee’s Plans for FDA-Related Issues, Remy Brim, Senior FDA Policy Advisor, HELP Committee Ranking Member Patty Murray […]

Children’s Cause Cancer Advocacy is Encouraging Patients to Ask Their Members of Congress to Support the STAR Act

The Childhood Cancer STAR Act is designed to advance pediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance and providing enhanced resources for survivors. Children’s Cause Cancer Advocacy is asking advocates to write to their Members of Congress to voice their support. Click here to take action.

21st Century Cures Update: One Year Later

On November 30th, the House Energy and Commerce Committee held a hearing to discuss, “Implementing the 21st Century Cures Act: An Update from FDA and NIH.” A year after 21st Century Cures Act was signed into law, Members of Congress asked Francis Collins, Director, National Institutes of Health (NIH) and Scott Gottlieb, Commissioner, Food and Drug Administration (FDA) to provide updates.

EveryLife Foundation Urges Advocates to Ask Their Members of Congress to Support the OPEN ACT

The EveryLife Foundation asks you to take action to support the Orphan Product Extensions Now, Accelerating Cures and Treatments (OPEN ACT, H.R. 1223 / S. 1509). The OPEN ACT could bring hundreds of safe, effective, and affordable medicines to rare disease patients within the next several years by incentivizing drug makers to repurpose therapies for […]

The EveryLife Foundation, NORD and Global Genes are Asking Patient Advocates to Tell Congress to Save Orphan Drugs by GIVING THANKS for Rare Disease Treatments

Without the Orphan Drug Tax Credit, investment in therapies for rare disease patients is at risk!  Before the Orphan Drug Act, manufacturers were often hesitant to invest in developing new treatments for rare diseases because the small patient population made it difficult to recover development costs. 

TAKE ACTION NOW to preserve the ODTC by telling Congress why YOU are grateful for it!  Use #RareGratitude and put it to good use!

November 14: Monthly Legislative Meeting

RDLA’s November Legislative Webinar and In-Person Meeting Tuesday, November 14th, 2017 12:00 – 1:00 pm ET The National Biomedical Research Act, Beth Pearson, Health and Economic Policy Advisor, Office of Senator Elizabeth Warren (D-MA) The Orphan Drug Tax Credit, Paul Melmeyer, Director of Federal Policy, National Organization for Rare Disorders (NORD) State Medicaid Waivers, Hannah Katch, […]