The Federal Newborn Screening Program at a Crossroads
As Newborn Screening Awareness Month concludes, IGT applauds the tireless work of advocates who dedicate themselves 365 days of the year...
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Latest News
Sep 24
What Newborn Screening Really Means in the Sickle Cell Disease Community and Beyond
Author: Andrea Matthews, Founder, Children’s Sickle Cell Foundation, Inc. Newborn screening (NBS) is an important public health measure...
Aug 30
IGT Patient Advocacy Advisory Council Members Recognize Newborn Screening Awareness Month
Newborn screening is critical to ensure faster access to treatment and cures for genetic conditions. This September, IGT is recognizing...
Jun 29
IGT Joins House Budget Committee Health Care Task Force Roundtable on Cell and Gene Therapies
On Friday, June 28, the House Budget Committee Health Care Task Force hosted a roundtable entitled, “Paying for 21st Century Cures:...
Jun 13
IGT, ARM Congressional Briefing Highlights: MDRP Proposed Changes Threaten Patient Access to Care
The Centers for Medicare and Medicaid Services (CMS) may soon finalize proposed changes to the Medicaid Drug Rebate Program (MDRP) that,...
May 13
Congressional Briefing: Realizing the Promise of Gene Therapy: Protecting Patients & Innovation
On May 9, the Institute for Gene Therapy (IGT), along with the Alliance for Regenerative Medicine (ARM), held a Congressional briefing...
Apr 30
IGT Statement on Senate Introduction of the MVP Act
Today, Senators Markwayne Mullin (R-OK), Kyrsten Sinema (AZ), Tim Scott (SC), and Maggie Hassan (NH) introduced the Senate companion to...
Apr 27
Health Care’s Genetic and Cellular Transformation Must Benefit All Patients in Need
By Regina Hartfield, President and CEO, Sickle Cell Disease Association of America, Inc. This year, we celebrate a landmark step forward...
Apr 8
IGT Responds to HRSA RFI on Nomination and Evidence-Based Review Process of the Advisory Committee on Heritable Disorders in Newborns and Children
Last week, the Institute for Gene Therapies (IGT) sent a response to the Health Resources and Services Administration (HRSA) Request for...
Mar 28
IGT Recognizes National Minority Health Month (NMHM)
As we recognize National Minority Health Month (NMHM), the Institute for Gene Therapies (IGT)’s Scientific, Academic and Medical Advisory...
Feb 15
AEI Panel Discussion: Navigating Emerging Technologies in Cell and Gene Therapy
On February 14, IGT Chairman Erik Paulsen joined a panel of experts at the American Enterprise Institute’s (AEI) event, “Navigating...
Jan 25
IGT Responds to Senator Bill Cassidy’s RFI on Improving Americans’ Access to Gene Therapies
This week, the Institute for Gene Therapies (IGT) sent a response to the Senate Health, Education, Labor, and Pensions (HELP) Committee...
Dec 21, 2023
Congressional Briefing: Realizing the Promise of Gene Therapy: Ensuring Access
On December 13, the Institute for Gene Therapies held its third Congressional Briefing of 2023, "Realizing the Promise of Gene Therapy:...
Nov 30, 2023
Year In Review: Gene Therapies Make a Big Splash in 2023
Gene therapies are changing the way we treat diseases by targeting the cause of a disease directly at the DNA level, rather than...
Sep 22, 2023
ASGCT Policy Summit Brings Together Stakeholders to Address Access Issues
By IGT Director of Health Policy & Advocacy John Feore This month, I had the opportunity to participate in the American Society of Cell...
Jul 12, 2023
Congressional Briefing: Realizing the Promise of Gene Therapy: Ensuring Access
On June 26th, the Institute for Gene Therapies hosted its second Congressional Briefing focused on the promise of gene therapy, its...
May 31, 2023
ICYMI: Gene therapy provides hope for Huntington’s Disease patients
Lauren Holder, Huntington’s Disease Patient Advocate and member of the Institute for Gene Therapy Patient Advocacy Advisory Council,...
May 24, 2023
What They’re Saying: Strong Support for the MVP Act
Patients, researchers, and other key stakeholders are weighing in on the importance of the Medicaid VBPs for Patients Act, or the MVP Act...
Apr 25, 2023
IGT Congressional Letter and Statement on the Re-Introduction of the MVP Act (H.R. 2666)
Today, the Institute for Gene Therapies (IGT) sent a letter to Congress applauding Representatives Brett Guthrie (R-KY), Anna Eshoo...
Apr 11, 2023
Perspective: Advancing Hope for Andrew and Countless Others
By Nate Plasman This February, I had the opportunity to travel to Capitol Hill to participate in the Institute for Gene Therapy’s...
Mar 31, 2023
Our Healthcare Policies Must Account for the True Value of Transformative Gene Therapies
By IGT Chairman Erik Paulsen As more breakthrough gene therapies are developed and brought to market, a critical element in bringing...
Feb 23, 2023
Congressional Briefing: Realizing the Promise of Gene Therapy through Science & Policy
On February 21, the Institute for Gene Therapies hosted a panel discussion on the science of gene therapy, its impact on patients and...
Nov 2, 2022
ICYMI: Cure Sickle Cell Disease by 2030?
IGT Scientific, Academic, and Medical Council Chair Dr. Donna Christian-Christensen recently wrote an opinion piece for Inside Sources,...
Oct 13, 2022
A Bold Goal to Cure Sickle Cell Disease by 2030
By IGT Scientific, Academic & Medical Advisory Council Chair Donna M. Christensen Last week, during the Congressional Black Caucus...
Jul 7, 2022
IGT Comments on CMS Fiscal Year 2023 Medicare Inpatient Prospective Payment Systems Proposed Rule
Earlier this month the Institute for Gene Therapies submitted a comment letter to the Centers for Medicare and Medicaid Services (CMS) on...
Jun 17, 2022
New Resource: Understanding the Complexity of Gene Therapy Science & Manufacturing
Gene therapies present a unique opportunity to change the way we treat diseases. Given the complex nature of these transformative...
May 3, 2022
IGT Chairman Erik Paulsen Joins Healthy Future Task Force Treatments Subcommittee Roundtable
On April 28th, IGT Chairman Paulsen joined leaders in Congress on the Healthy Future Task Force Treatments Subcommittee Roundtable. The...
Apr 20, 2022
A Troubling Policy Proposal
Last week, IGT joined many organizations in expressing concern about a policy proposal that would restrict patients’ access to certain...
Apr 18, 2022
Prioritizing Minority Health
By IGT Scientific, Academic & Medical Advisory Council Chair Donna M. Christensen April is National Minority Health Month, an important...
Apr 5, 2022
IGT Statement on the Introduction of the Medicaid VBPs for Patients Act (H.R. 7389)
WASHINGTON, DC (April 5, 2022) – Today, the Institute for Gene Therapies (IGT) Chairman Congressman Erik Paulsen issued the following...
Feb 25, 2022
Rare Disease Day Spotlight: Hope for HPP Patients
By Deborah Fowler, President & Founder of Soft Bones Rare Disease Day is a critical awareness day for many patients and families who are...
Feb 1, 2022
Changing the Way We Look at Huntington’s Disease
By IGT Patient Advocacy Advisory Council Member and Huntington's Disease Patient Advocate Seth Rotberg As we enter the third year of the...
Nov 19, 2021
IGT Statement on CMS Final Rule on Medicaid Value-based Purchasing Arrangements
WASHINGTON, DC (November18, 2021) – Today, the Institute for Gene Therapies (IGT) Chairman Congressman Erik Paulsen issued the following...
Aug 7, 2021
IGT Statement on Senate's FY2022 Appropriations Bill
WASHINGTON, DC (August 6, 2021) – Today, the Institute for Gene Therapies (IGT) Chairman Congressman Erik Paulsen issued the following...
Jun 29, 2021
Patient Perspective: Khrystal Davis
TX RARE works to improve access and health outcomes for nearly three million Texans living with rare diseases. Khrystal Davis, Founder of...
Apr 29, 2021
Howard University’s Dr. Sudha Sharma on the Importance of Addressing Health Inequities
IGT is proud to have the National Human Genome Center of Howard University as a member of our Scientific, Academic & Medical Council....
Apr 27, 2021
IGT Statement on ICER’s Analysis of the Accelerated Approval Pathway
WASHINGTON, DC (April 27, 2021) – Today, the Institute for Gene Therapies (IGT) Chairman Congressman Erik Paulsen issued the following...
Apr 19, 2021
The Importance of National Minority Health Month
By IGT Scientific, Academic and Medical Council Chair Donna M. Christensen April is National Minority Health Month, a time to recognize...
Mar 25, 2021
NEW IGT Policy Resources Available
Gene therapies offer a completely new way of treating a range of serious diseases. But before we can realize their full potential, a...
Mar 2, 2021
IGT Recognizes Rare Disease Day
This Sunday, February 28th marks the 14th Rare Disease Day. Patients, advocates, providers, and others around the world recognize this...
Dec 23, 2020
IGT Comments on CMS Final Rule on Value-based Purchasing Arrangements
WASHINGTON, DC (December 23, 2020) – Today, the Institute for Gene Therapies (IGT) Chairman Congressman Erik Paulsen issued the following...
Dec 22, 2020
Patient Perspective: Erin Frey with CureDuchenne
CureDuchenne’s mission is to improve the lives of everyone affected by Duchenne through accelerating research to find the cure, improving...
Sep 23, 2020
Patient Perspective: Cure SMA
September is Newborn Screening Awareness Month, a dedicated time to educate the public about this critical screening. IGT advocates for...
Sep 8, 2020
Dr. Peter Marks Clarifies FDA’s Approach to Gene Therapies After CRL for Hemophilia A Treatment
By Jennifer McNary, mother of two sons with Duchenne muscular dystrophy, patient advocate and founder of One Rare. For all the incredible...
Aug 25, 2020
Patient Perspective: EveryLife Foundation for Rare Diseases
One of our founding Patient Advisory Council Members, the EveryLife Foundation for Rare Diseases, is a 501(c)(3) nonprofit, nonpartisan...
Jul 21, 2020
IGT Comments on CMS Proposed Rule on Value-based Purchasing Arrangements
Proposed rule advances longstanding priority for gene therapy stakeholders FOR IMMEDIATE RELEASE July 20, 2020 CONTACT: Macey Kostbar,...
Jul 16, 2020
IGT Webinar on CMS Proposed Rule on Value-based Purchasing
On Monday, July 13, the Institute for Gene Therapies (IGT) held a conversation with recognized experts on the CMS proposed rule that...
Jul 7, 2020
IGT to Host Webinar on CMS Proposed Rule on Value-based Purchasing
On Monday, July 13, 2020 at 4 PM Eastern Time, the Institute for Gene Therapies (IGT) will host a conversation with recognized experts...
Jun 19, 2020
IGT Statement on CMS Proposed Rule to Facilitate Value-based Purchasing Arrangements
FOR IMMEDIATE RELEASE CONTACT: Macey Kostbar msevcik@gene-therapies.org WASHINGTON, DC (June 18, 2020) – Below is a statement from the...
May 11, 2020
Patient Perspective: Susan Ruediger
Susan Ruediger is the founder and CEO of the CMT Research Foundation — a nonprofit organization with the single focus to expedite...
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