Monthly Archives: December 2023
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...
GFPD Family And Scientific Conference: Warrior Camp Fellowship
Global Rare Disease Organization to Host 2024 Family and Scientific Conference to Include Fellowship Program...
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