NE Washington News

House Energy and Commerce Committee Chair Cathy McMorris Rodgers and Subcommittee on Health Chair Brett Guthrie have announced a legislative hearing titled “Legislative Proposals to Support Patients with Rare Diseases.” According to the Chairs, Energy and Commerce Republicans are dedicated to defending the value and dignity of all life, including those living with rare diseases. They emphasized the importance of providing opportunities for individuals with rare diseases to live abundant lives and ensuring access to life-saving treatments.

The upcoming legislative hearing, scheduled for Thursday, February 29, 2024, at 10:00 AM in the 2123 Rayburn House Office Building, will focus on discussing solutions to support patients living with rare diseases. The hearing will feature discussions on various legislative proposals aimed at supporting individuals affected by rare diseases, including bills such as the Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act, the Give Kids a Chance Act, and the ALS Better Care Act, among others.

The legislative proposals to be discussed during the hearing cover a wide range of topics related to rare diseases, from enhancing treatment frameworks to improving access to care for children and advocating for research progress and innovation. The witnesses for the hearing will be announced and are by invitation only.

The hearing, which will be open to the public and press, will also be live streamed online. For further information about the hearing, individuals can contact Emma Schultheis at Emma.Schultheis@mail.house.gov, and for press-related inquiries, they can reach out to Christopher Krepich at Christopher.Krepich@mail.house.gov.

This legislative initiative aims to address the unique challenges faced by individuals with rare diseases and to advance efforts in finding treatments and cures that offer hope to those in need.