2024 #PAUSEfortheGFPD Op-Eds

We are grateful to the Guise, Gratton, and DelSorbo families for composing Op-Eds in support...

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...

Brain Awareness Week March 13-19, 2023

Brain Awareness Week is a global campaign during the week of March 13-19, 2023. There...

The GFPD is pleased to support the BENEFIT Act, to elevate the patient voice in the FDA drug development process.

Congress and the Food and Drug Administration (FDA) have made considerable progress in driving forward...

GFPD Patient Ambassador Jayla Morrison and Mother, Courtney, Advocate in Colorado for Peroxisomal Disorders Awareness

Becoming a teenager is a big milestone for any young American, but Jayla Morrison’s 13th...

Not All Supplements Are Safe

Having a rare, multi-system disease like a peroxisomal disorder often means taking multiple medications and...

GFPD joins with 125 other patient advocacy groups urging congress to support critical rare disease priorities

The GFPD is proud to be one of 126 organizations, representing or treating patients impacted...

GFPD and the Financial Impact of Rare Disease

Earlier this year, the GFPD received a grant from Global Genes to support our conference...

GFPD joins with over 100 rare disease organizations to support Accelerating Kids’ Access to Care Act

The third annual GFPD Warrior Walk Run Ride on September 30th – October 2nd

The third annual GFPD Warrior Walk Run Ride is quickly approaching! Celebrate all GFPD Warriors...

The GFPD’s Corin Chapman and Catherine Argyriou present at the World Orphan Drug Congress in Boston

GFPD Board Member, Corin Chapman and Catherine Argyriou, postdoctoral fellow, Braverman Lab, McGill University recently...

The GFPD and the Rare Disease Community Urges States to Take Advantage of Funding to Screen More Babies

The GFPD was one of 12 patient organizations who recently sent a letter urging nine...

Governor Youngkin Announces Addition of Two New Disorders to Virginia’s Newborn Screening Program

RICHMOND, VA – Governor Glenn Youngkin today announced the addition of two new disorders to...

Rare Disease Day

Do you have your colorful stripes ready?! Rare Disease Day is February 28th! For 14...

GFPD Supports Legislation for Newborn Screening in Iowa

HSB 690 /SSB 3122 both passed out of their respective committees in the Iowa State...

The GFPD Supports North Carolina HB 736

https://everylifefoundation.org/voter-voice/?vvsrc=%2fcampaigns%2f80975%2frespond

The GFPD advocates for Paid Leave for Family Caregivers Across the Lifespan

Over the past year, millions of family caregivers found themselves needing to isolate or take...

The GFPD advocates for Paid Leave for Family Caregivers Across the Lifespan

Over the past year, millions of family caregivers found themselves needing to isolate or take...

The GFPD joins with the TS Alliance to Advocate for Prioritization of Individuals with Rare Diseases and their Caregivers to have Immediate access to COVID-19 Vaccines.

On February 12, 2021, the GFPD joined with the TS Alliance and 69 other advocacy...

The GFPD (along with hundreds of other U.S. nonprofits) advocates for additional 2021 COVID relief, led by the National Council of Nonprofits.

At this time of a worldwide pandemic, economic uncertainty, and national turmoil, there can be...

The GFPD (along with hundreds of other U.S. nonprofits) advocates for additional 2021 COVID relief, led by the National Council of Nonprofits.

At this time of a worldwide pandemic, economic uncertainty, and national turmoil, there can be...