Entries by Sabah Bhatnagar

September 20: Monthly Legislative Meeting

RDLA’s September Legislative Webinar and In-Person Meeting Wednesday, September 20th, 2017 12:00 – 1:00 pm ET 1. The Haystack Project: Bridging Innovation and Patient Access, Saira Sultan, President and CEO, Connect 4 Strategies 2. The Orphan Drug Tax Credit, Paul Melmeyer, Director of Federal Policy, National Organization for Rare Disorders (NORD) 3. The California EXPERRT […]

NORD is Encouraging Advocates to Ask Their Senators to Oppose the “Graham-Cassidy” Bill

The Senate is currently considering an Affordable Care Act (ACA) replacement bill co-sponsored by Senators Bill Cassidy (R-LA) and Lindsey Graham (R-SC). The National Organization for Rare Disorders (NORD) is asking patient advocates to email or call their Senators to oppose this “Graham-Cassidy” bill. The organization has outlined how this legislation could be detrimental for […]

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 […]

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

On September 13th, the Rare Disease Congressional Caucus will host a briefing on “Curing Rare Disease: Policy and Regulation Needed for Emerging Technology.” This event will brief Members of Congress and staff on the need for policy and regulation that does not only keep pace in this new era of innovation, but also ensures that patients benefit the application of new technologies to safe and effective treatments.

SYNGAP Asks Patient Advocates to Sign Letter on Quality-Based Physician Reimbursement

When Congress replaced the Sustainable Growth Rate (SGR) formula for how clinicians got their annual raises and bonuses (and penalties), they replaced it with a system where clinicians had to meet certain quality measures, make improvements to their practices, use technology to aid the patient experience, etc. Now kicking off it’s second year of this […]

The Alliance for a Stronger FDA Encourages Advocates to Ask Their Legislators for Robust FDA Appropriations

The Alliance for a Stronger FDA is encouraging patient advocates to ask their legislators to support robust funding for the Food and Drug Administration (FDA). The FDA plays a critical role for rare disease patients because: The Agency ensures access to safe and effective medical products and is key to preserving public health. FDA-regulated industries […]

Rare New England Asks Massachusetts Residents to Contact Their State Legislators in Support of MA Rare Disease Advisory Council

Rare New England (RNE) asks Massachusetts residents to call or email state legislators to ask for their support for HB3714, “An Act to Create a Rare Disease Advisory Council.” RNE has been collaborating with MA State Representative Paul Heroux, who has championed HB3714, since 2015. To learn more about the bill, click here.