News - The Global Foundation for Peroxisomal Disorders

Brain Awareness Week March 13-19, 2023

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

15
Mar

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...

23
Feb

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...

02
Feb

Not All Supplements Are Safe

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

11
Jan

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...

16
Nov

GFPD and the Financial Impact of Rare Disease

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

01
Oct

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

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08
Sep

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...

08
Aug

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...

02
Aug

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...

08
Apr

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...

23
Mar

Rare Disease Day

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

23
Feb

GFPD Supports Legislation for Newborn Screening in Iowa

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

20
Feb

The GFPD Supports North Carolina HB 736

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

11
May

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...

29
Apr

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

April 26, 2021

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...

25
Mar

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...

22
Mar

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

March 2, 2021

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

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.

February 12, 2021

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

UNMC researcher heads $3.3 million national study

Dr. Rizzo said several of the diseases are so rare that between 500 and 1,000...

03
Feb

Letter: Pause for PBD, think of Ethan

Oct. 5 is a special day for our family as we celebrate Pause for PBD,...

03
Feb

Business Perspective with Melissa Bryce Gamble: Use this checklist to start your nonprofit

Melissa Bryce Gamble is president and co-founder of the Global Foundation for Peroxisomal Disorders, which...

03
Feb

Pause for PBD

Melissa Bryce Gamble shares the story of her daughter Ginny's battle with a peroxisome biogenesis...

03
Feb

Jersey County Journal – Letter to Editor for Pause for PBD

The Jersey County Journal featured a letter to the editor, from Vicky Maag, about our...

03
Feb

A walk for a child with a rare disease in Saint-Quentin

Thomas Thériault, of Saint-Quentin, will celebrate his second birthday on November 24. His community recently...

03
Feb