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U.S. Senate Committee on Aging Press Conference
October 26 @ 10:00 am - 11:00 am
This Thursday, PWSA | USA advocates will participate in a groundbreaking opportunity for the PWS community! On October 26, 2023, our advocates will be present for a press conference on Capitol Hill, hosted by Senator Mike Braun (R-IN), Senator Kirsten Gillibrand (D-NY), Representative Mike Gallagher (R-WI), and Representative Mike Quigley (D-IL). The press event will give details about the Promising Pathway Act (PPA) and how rare diseases, including PWS, would benefit from its passage.
The Senate Committee on Aging will then hold a hearing titled Unlocking Hope: Access to Therapies for People with Rare, Progressive, and Serious Diseases. Our dedicated advocates will participate in the congressional hearing and raise awareness for PWS.
Soleno Therapeutics has also announced the company’s CEO Anish Bhatnagar, M.D., will provide a witness statement during the Senate committee hearing. According to their release, “Both events (the press conference and hearing) will highlight the barriers to treatment faced by Americans with rare and progressive diseases. Anish Bhatnagar, M.D., Chief Executive Officer of Soleno Therapeutics will act as a witness in the Senate hearing and share the regulatory challenges faced by the Prader-Willi Syndrome community, and the broader rare disease community.”
Click HERE to access the link to watch the Senate committee hearing LIVE on Thursday at 10:00AM EST! Ahead of the congressional hearing, you are also encouraged to share your story with Congress to amplify our community’s voice. If you’re interested in participating, click HERE to learn more.
ABOUT THE PROMISING PATHWAY ACT
Introduced by Senator Mike Braun (R-IN), Senator Kirsten Gillibrand (D-NY), Senator Lisa Murkowski (R-AK), Senator Kevin Cramer (R-ND) and Senator Roger Wicker (R-MS), this bill would expedite beneficial outcomes for patients by requiring the FDA to establish a rolling, real-time, priority review pathway for drugs intended to treat, prevent, or diagnose serious or life-threatening diseases or conditions. Learn more by clicking HERE.