Washington, D.C. — House Energy and Commerce Committee Chair Cathy McMorris Rodgers (R-WA) and Subcommittee on Health Chair Brett Guthrie (R-KY) today announced a legislative hearing titled “Legislative Proposals to Support Patients with Rare Diseases.”

“Energy and Commerce Republicans have consistently and proudly defended the value and dignity of all life. Those living with rare diseases are no different and deserve every opportunity to live an abundant life. We are proud to continue building on the Committee’s previous efforts, like our recent work to ban the discriminatory practice of Quality-Adjusted Life Years, by considering legislative proposals that further support patients with rare diseases and ensure they can maintain access to live saving treatments,” said Chairs Rodgers and Guthrie. “By supporting research and fostering innovation, we can continue to support finding treatments and cures that provide hope to patients in need.” 

Subcommittee on Health hearing titled “Legislative Proposals to Support Patients with Rare Diseases.”  

WHAT: A legislative hearing to discuss solutions to support patients living with rare diseases.  

DATE: Thursday, February 29, 2024  

TIME: 10:00 AM  

LOCATION: 2123 Rayburn House Office Building  

WITNESSES: Witnesses will be announced and are by invitation only. 

LEGISLATION TO BE DISCUSSED: 

• H.R. 1092, Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act (Reps. Matsui and Wenstrup) 
• H.R. 3433, Give Kids a Chance Act (Reps. McCaul and Eshoo) 
• H.R. 4758, Accelerating Kids Access to Care Act (Reps. Trahan and Miller-Meeks) 
• H.R. 5539, Optimizing Research Progress Hope And New (ORPHAN) Cures Act (Reps. Joyce and Nickel) 
• H.R. 5547, Maintaining Investments in New Innovation (MINI) Act (Reps. Nickel and Joyce) 
• H.R. 5663, ALS Better Care Act (Reps. Schakowsky, Quigley, Fitzpatrick) 
• H.R. 6020, Honor Our Living Donors Act (Reps. Obernolte and DelBene) 
• H.R. 6094, Providing Realistic Opportunity To Equal and Comparable Treatment for (PROTECT) Rare Act (Reps. Matsui and Dunn) 
• H.R. 6465, Preserving Life-saving Access to Specialty Medicines in America (PLASMA) Act (Reps. Hudson and Davis) 
• H.R. 6664, Innovation in Pediatric Drugs Act (Reps. Eshoo and McCaul) 
• H.R. 6705, Effective Screening and Testing for Tuberculosis Act (Reps. Moolenaar and Dingell)
• H.R. 7188, Shandra Eisenga Human Cell and Tissue Product Safety Act (Reps. Moolenaar and Dingell) 
• H.R. 7248, FDA Modernization Act 3.0 (Reps. Carter and Barragan) 
• H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act (Reps. Matsui and Bilirakis)  
• H.R. 7384, Creating Hope Reauthorization Act of 2024 (Reps. McCaul and Eshoo) 
• H.R. ____, Antimicrobial Resistance Research Assessment Act (Rep. Griffith) 
• H.R. ____, Patient Access Act (Rep. Guthrie) 
• H.R. ____, Sickle Cell Disease Comprehensive Care Act (Rep. Burgess)

This notice is at the direction of the Chair. The hearing will be open to the public and press and will be live streamed online at https://energycommerce.house.gov/. If you have any questions concerning the hearing, please contact Emma Schultheis with the Committee staff at Emma.Schultheis@mail.house.gov. If you have any press-related questions, please contact Christopher Krepich at Christopher.Krepich@mail.house.gov.