Hearing:
Legislative Proposals to Support Patients with Rare Diseases
Subcommittee on Health (Committee on Energy and Commerce)
Thursday, February 29, 2024 (10:00 AM)
2123 RHOB
Washington, D.C.
Witnesses
Dr. Terence Flotte, MD
Provost and Dean of UMass Chan Medical School, Vice President of American Society of Gene and Cell Therapy (ASGCT)
Added
02/27/2024 at 02:24 PM
- Witness Statement
[PDF]
Added
02/27/2024 at 04:54 PM
- Questions For the Record, Transmittal Letter
[PDF]
Added
04/18/2024 at 05:47 PM
- Truth in Testimony
[PDF]
Added
03/05/2024 at 03:29 PM
- Curriculum Vitae
[PDF]
Added
02/27/2024 at 04:54 PM
Dr. Alexander Bassuk, MD, PhD
Physician-in-Chief, University of Iowa Stead Family Children’s Hospital; Chair and Professor, Stead Family Department of Pediatrics
Added
02/27/2024 at 02:24 PM
- Witness Statement
[PDF]
Added
02/27/2024 at 04:54 PM
- Questions For the Record, Transmittal Letter
[PDF]
Added
04/18/2024 at 05:47 PM
- Truth in Testimony
[PDF]
Added
03/05/2024 at 03:29 PM
- Curriculum Vitae
[PDF]
Added
02/27/2024 at 04:54 PM
Dr. Aaron Kesselheim, MD, JD, MPH
Professor of Medicine, Harvard Medical School; Director, Program On Regulation, Therapeutics, And Law (PORTAL) at Brigham and Women’s Hospital
Added
02/27/2024 at 02:24 PM
- Witness Statement
[PDF]
Added
02/27/2024 at 04:54 PM
- Questions For the Record, Transmittal Letter
[PDF]
Added
04/18/2024 at 05:47 PM
- Truth in Testimony
[PDF]
Added
03/05/2024 at 03:29 PM
- Curriculum Vitae
[PDF]
Added
02/27/2024 at 04:54 PM
Dr. Jeromie Ballreich, PhD, MHS
Associate Research Professor, Johns Hopkins Bloomberg School of Public Health
Added
02/27/2024 at 03:45 PM
- Witness Statement
[PDF]
Added
02/28/2024 at 06:35 PM
- Questions For the Record, Transmittal Letter
[PDF]
Added
04/18/2024 at 05:47 PM
- Truth in Testimony
[PDF]
Added
03/05/2024 at 03:29 PM
- Curriculum Vitae
[PDF]
Added
02/28/2024 at 06:35 PM
Dr. Alice Chen, PhD
Senior Fellow, USC Schaeffer Center for Health Policy & Economics; Associate Professor & Vice Dean for Research, USC Sol Price School of Public Policy
Added
02/27/2024 at 02:24 PM
- Witness Statement
[PDF]
Added
02/27/2024 at 04:54 PM
- Questions For the Record, Transmittal Letter
[PDF]
Added
04/18/2024 at 05:47 PM
- Truth in Testimony
[PDF]
Added
03/05/2024 at 03:29 PM
- Curriculum Vitae
[PDF]
Added
02/27/2024 at 04:54 PM
Ms. Khrystal Davis, JD
Founding President, Texas Rare Alliance
Added
02/27/2024 at 02:24 PM
- Witness Statement
[PDF]
Added
02/28/2024 at 01:41 PM
- Questions For the Record, Transmittal Letter
[PDF]
Added
04/18/2024 at 05:47 PM
- Truth in Testimony
[PDF]
Added
03/05/2024 at 03:29 PM
- Curriculum Vitae
[PDF]
Added
02/28/2024 at 09:33 AM
Text of Legislation
- H.R. 6020, Honor Our Living Donors Act (Reps. Obernolte and DelBene)
[PDF]
- H.R. 3433, Give Kids a Chance Act (Reps. McCaul and Eshoo)
[PDF]
- H.R. 7384, Creating Hope Reauthorization Act of 2024 (Reps. McCaul and Eshoo)
[PDF]
- H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act (Reps. Matsui and Bilirakis)
[PDF]
- H.R. 7248, FDA Modernization Act 3.0 (Reps. Carter and Barragán)
[PDF]
- H.R. 6705, Effective Screening and Testing for Tuberculosis Act (Reps. Moolenaar and Dingell)
[PDF]
- H.R. 7188, Shandra Eisenga Human Cell and Tissue Product Safety Act (Reps. Moolenaar and Dingell)
[PDF]
- H.R. 1092, Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act (Reps. Matsui and Wenstrup)
[PDF]
- H.R. 4758, Accelerating Kids Access to Care Act (Reps. Trahan and Miller-Meeks)
[PDF]
- H.R. 6465, Preserving Life-saving Access to Specialty Medicines in America (PLASMA) Act (Reps. Hudson and Davis)
[PDF]
- H.R. 5539, Optimizing Research Progress Hope And New (ORPHAN) Cures Act (Reps. Joyce and Nickel)
[PDF]
- H.R. 5547, Maintaining Investments in New Innovation (MINI) Act (Reps. Nickel and Joyce)
[PDF]
- H.R. 6094, Providing Realistic Opportunity To Equal and Comparable Treatment for (PROTECT) Rare Act (Reps. Matsui and Dunn)
[PDF]
- H.R. 6664, Innovation in Pediatric Drugs Act (Reps. Eshoo and McCaul)
[PDF]
- H.R. 5663, ALS Better Care Act (Reps. Schakowsky, Quigley, and Fitzpatrick)
[PDF]
- H.R. 7436, Antimicrobial Resistance Research Assessment Act (Rep. Griffith)
[PDF]
- H.R. ____, Patient Access Act (Rep. Guthrie)
[PDF]
- H.R. ____, Sickle Cell Disease Comprehensive Care Act (Rep. Burgess)
[PDF]
Support Documents
- Hearing Notice
[PDF]
- Public Memo
[PDF]
Added
02/27/2024 at 02:24 PM
- Documents For the Record
[PDF]
Added
02/29/2024 at 04:27 PM
Member Statements
- Cathy McMorris Rodgers Opening Statement
[PDF]
Added
02/29/2024 at 04:44 PM
- Brett Guthrie Opening Statement
[PDF]
Added
02/29/2024 at 04:44 PM
- Anna Eshoo Opening Statement
[PDF]
Added
03/05/2024 at 03:29 PM
- Frank Pallone, Jr. Opening Statement
[PDF]
Added
03/05/2024 at 03:29 PM
Hearing Record
- Member Attendance
[PDF]
Added
03/25/2024 at 08:11 PM
- Unedited Hearing Transcript
[PDF]
Added
03/25/2024 at 08:11 PM
First Published:
February 23, 2024 at 11:56 AM
Last Updated:
April 18, 2024 at 05:47 PM