Category Archives: News
Funding Bill Signed Into Law
The Fiscal Year 2026 (FY26) Labor-HHS-Education appropriations bill – which includes the Accelerating Kids’ Access to Care...
2024 #PAUSEfortheGFPD Op-Eds
We are grateful to the Guise, Gratton, and DelSorbo families for composing Op-Eds in support...
Nov
Minor changes to the Inflation Reduction Act (IRA) will make a big difference for rare disease patients.
170 patient organizations have signed on to the linked letter of support urging Congress to...
NIH grant establishes Mouse Mutant Peroxisome Research Resource
Jackson Laboratory Director, Technology Evaluation and Development Aamir Zuberi, Ph.D., along with co-principal investigators Joseph Hacia,...
Pause for the GFPD
Thank you to the Heath family for sharing Molly Kate’s story to bring awareness of...
‘Pause’ for rare genetic disorder
Thank you to the Clouse family for sharing Gwendolyn’s story for awareness around peroxisomal disorders...
Letter to the editor: Oct. 5 is a day of remembrance for people with PBD
Thank you to Kathleen Maynard for sharing her story with the Herald-Dispatch in order to...
Inflation Reduction Act Drug Negotiation Sign On Letter to CMS
The GFPD is one of 101 organizations that recently sent a letter to CMS regarding...
Apr
Brain Awareness Week March 13-19, 2023
Brain Awareness Week is a global campaign during the week of March 13-19, 2023. There...
Mar