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 Act, Siri Vaeth, Programs and Outreach Manager at Cystic Fibrosis Research, Inc.
4. The Children’s Health Insurance Program (CHIP), Marielle Kress, Assistant Director of Federal Affairs, American Academy of Pediatrics
5. Rare Disease Week on Capitol Hill, Stephanie Fischer, Senior Director of Patient Engagement and Communications, EveryLife Foundation for Rare Diseases
6. The 6th Annual RareVoice Awards, Sabah Bhatnagar, Program Director, Rare Disease Legislative Advocates, EveryLife Foundation for Rare Diseases
9.20.17 Slide Deck
Once a month, RDLA convenes in person and/or over the phone to discuss legislation and developments that affect the rare disease community. The meeting/conference calls are essentially a clearing house for legislation and participation does not imply support for any of the policy proposals or legislation that are discussed or promoted.