Entries by Sabah Bhatnagar

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, […]

Congress Mulls Healthcare Stabilization Efforts

After President Trump announced his intention to scrap health insurance marketplace subsidies via executive order earlier this month, Senators Patty Murray (D-WA) and Lamar Alexander (R-TN) introduced a bipartisan bill entitled, “the Health Care Stabilization Act of 2017” in an attempt to stabilize the marketplace.

Danny’s Dose is Asking MN Patient Advocates to Call Their State Legislators in Support of EMS Protocol Bills

HB972 and SF1023 are EMS Protocol Bills that support individuals with “special medical needs.” In order to preserve these bills in their current state, Danny’s Dose is encouraging advocates to call or email their legislators to voice their support. If authors change legislative language to only cover Adrenal Insufficiency, thousands of patients could be left […]

Call on Your Members of Congress to Attend the November Rare Disease Congressional Caucus Briefing!

On November 15th, the Rare Disease Congressional Caucus will host a briefing on “Diagnostic Challenges for Rare Disease Patients.” This event will brief Members of Congress and staff on challenges to diagnosing rare disease, emerging technologies and possible policy solutions. Rare disease patients often have to see multiple doctors over many years before they receive a diagnosis. […]