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The Global Foundation for Peroxisomal DisordersThe Global Foundation for Peroxisomal Disorders
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    • What are peroxisomal disorders
    • Types of peroxisomal disorders
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Rare Disease Day

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

23
Feb
The GFPD Creates a Diversity Committee to Promote Greater Health Equity for Warriors and their Families.

The GFPD Creates a Diversity Committee to Promote Greater Health Equity for Warriors and their...

28
Jan
GFPD Diversity Statement
GFPD Diversity Statement

At the Global Foundation for Peroxisomal Disorders, we realized early on that equity is a...

04
Jan
travel tips
Tips for traveling with your GFPD Warrior this holiday season!

Traveling for everyone during the holidays can often be a stressful and frustrating experience. Add...

16
Dec
Inclusion tips
GFPD Inclusive Holiday Tips

Gatherings can be challenging for our GFPD warriors and their caregivers, especially when being held...

08
Dec
Hospice and Palliative Care - Making Special Moments Possible
Hospice and Palliative Care – Making Special Moments Possible

“We recommend calling in hospice care.” The words that every terminally ill patient and their...

16
Nov
National Disability Employment Awareness Month

This year, NDEAM’s theme is “America’s Recovery: Powered by Inclusion,” focusing on employment/economic opportunity, as...

16
Oct
Oct is Liver awareness month
October is Liver Awareness Month

October is liver awareness month and we reached out to Dr. Nancy Braverman at McGill...

06
Oct
#PAUSEforTheGFPD

Pause for The GFPD is officially 1 week away! Below are 8 great ways you...

28
Sep
Happy First Day of Summer!!

Happy first day of summer! Due to Covid-19, we haven’t been able to do a...

20
Jun
Building our Little Room – Follow up from “Discovering Our Connections- GFPD Virtual Meetup”

Recently I attended the Discovering Our Connections Virtual Family Meetup hosted by the GFPD. I...

05
Jun
History of peroxisome biogenesis disorder-Zellweger spectrum disorder (PBD-ZSD) Terminology

      The GFPD was founded in 2010 to fill an unmet need to...

21
May
Mother’s Day

I have often been asked what it is like being the mom to a child...

10
May
Honoring Our Bereaved Mothers

Alone and in the darkness, often feeling so incredibly hopeless: this was the reality of...

03
May
GFPD “Sensing Connections” Grief Support Group | Remembrance & Support

Alone. In the darkness, often feeling so incredibly hopeless. This was my reality of my...

26
Apr
Natalie and Gwendolyn's Rare Disease Week wrap up

 February 2020 was Gwendolyn and my first Rare Disease Week. Gwendolyn is my 21 month...

23
Mar
Spring update from GFPD Patient Ambassador, Anna Violet

Anna Violet says “Happy Spring Time” to all of her PBD family! Anna Violet has...

19
Mar
Anna Violet’s journey to a peroxisomal disorder diagnosis | GFPD 2020 Patient Ambassador

Our family’s journey to receiving Anna Violet’s diagnosis took approximately three months, but time moves...

16
Feb
Types of peroxisomal disorders: peroxisomal biogenesis disorders and single enzyme protein deficienc

Most peroxisomal disorders are rare, genetic (autosomal recessive) conditions that are often terminal and affect...

12
Feb
A diagnostic odyssey | How does a patient receive a diagnosis of a peroxisomal disorder?

A patient with either type of peroxisomal disorder (peroxisomal biogenesis disorder or single enzyme protein...

05
Feb
Meet 2020 Patient Ambassador, Anna Violet

After following a year in the life of Archer in 2019, this year, we will...

18
Jan
Reflections on 2019 | Looking ahead to 2020

As 2019 draws to a close, I’m filled with gratitude for our past and present...

30
Dec
2019 Patient Ambassador – A year with Archer

It is hard to believe 2019 is coming to a close soon. As a new...

27
Dec
A bereaved mom’s thoughts on grief during the Holidays.

“Christmas is usually one of my favorite holidays. I am one of ‘those’ parents who...

15
Dec
Family is at the heart of the GFPD

“You may often hear or see the phrase “GFPD is family,” and I fully and...

24
Nov
Recent Posts
  • The GFPD and the Rare Disease Community Urges States to Take Advantage of Funding to Screen More Babies April 8, 2022
  • Governor Youngkin Announces Addition of Two New Disorders to Virginia’s Newborn Screening Program March 23, 2022
  • Rare Disease Day February 23, 2022
  • GFPD Supports Legislation for Newborn Screening in Iowa February 20, 2022
  • The GFPD Creates a Diversity Committee to Promote Greater Health Equity for Warriors and their Families. January 28, 2022
  • GFPD Diversity Statement January 4, 2022
  • Tips for traveling with your GFPD Warrior this holiday season! December 16, 2021
  • GFPD Inclusive Holiday Tips December 8, 2021
  • Hospice and Palliative Care – Making Special Moments Possible November 16, 2021
  • National Disability Employment Awareness Month October 16, 2021
Archives
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  • December 2011 (1)
  • October 2011 (2)
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  • May 2011 (2)

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    GFPD Values

    Our Mission

    To improve the lives of individuals with Peroxisomal Disorders by funding research, championing scientific collaboration, and empowering families and professionals through educational programs and support services.

    GFPD Diversity Statement

    Peroxisomal disorders impact individuals of every race, ethnicity, socio-economic status, sex, gender, sexual orientation, belief system, ability, and age. Using our values of inclusion and community as our guide, The GFPD is committed to promoting acceptance and advocating for equality and equity in healthcare and educational settings while combating prejudices, discrimination, and biases. We will engage in this important dialogue with our diverse community by listening and learning from our families, researchers, and professionals.

    CONTACT

    P.O. Box 33238
    Tulsa, OK 74153

    CONTACT US

    Email: contactus@thegfpd.org
    Phone: ‪(405) 418-6061‬
    Fax: (918) 516-0227

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    • Welcome
    • Peroxisomal Disorders
      • What are peroxisomal disorders
      • Types of peroxisomal disorders
      • Signs and Symptoms
      • How do I get a diagnosis?
      • Facts at a Glance
    • About Us
      • Our Work
      • Our Mission
      • Our History
      • Achievement Timeline
      • Board of Directors
      • Scientific Advisory Board
      • Our Team
      • Our Partners
      • Impact Reports
    • Support and Resources
      • Family Directory
      • A Letter to Newly Diagnosed Parents
      • Information for Newly Diagnosed Patients
      • Care Resources
      • Bereavement Resources
      • Support Groups
      • Meet our GFPD Warriors
      • Equipment Exchange
    • Research
      • Current Research
      • Clinical Trials
      • Scholarly Articles
      • Past Scientific Conferences
    • Events
      • GFPD 2022 Family & Scientific Conference
    • More
      • Take Action
      • Advocate
      • Pause for The GFPD
      • Fundraise
      • Donate
      • Join a Committee
      • Shop
      • News
    • For Researchers
    • Blog