Entries by Sabah Bhatnagar

NORD is Encouraging Patient Advocates to Call or Email Their Members of Congress to Ask Them Not to Repeal the Orphan Drug Tax Credit

Lawmakers are currently considering tax reform legislation that could repeal an incentive for developing orphan drugs: the Orphan Drug Tax Credit (ODTC). NORD is encouraging advocates to call or email their Members of Congress to ask them not to repeal the ODTC. Last month, the organization circulated a letter from patient organizations to Congress highlighting […]

Funding for CHIP Has Expired

Congress has missed the September 30 deadline to renew funding for the Children’s Health Insurance Program (CHIP). CHIP is essential for families who do not qualify for Medicaid, but struggle to afford private insurance. A majority of states will deplete their CHIP dollars by March and some by December of this year.

The Epilepsy Foundation Asks Patient Advocates to Write to Their Legislators to Oppose the ADA Education and Reform Act of 2017

The Epilepsy Foundation is asking patient advocates to write to their legislators to encourage them to oppose the Americans with Disabilities Act (ADA) Education and Reform Act of 2017 (HR 620). According to the Foundation, the bill would weaken protections for people living with disabilities by making it easier for businesses to avoid complying with […]

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 […]

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.