GFPD

@thegfpd

We help children and families faced with a diagnosis of a Peroxisomal Biogenesis Disorder (in the Zellweger Spectrum of Disorders)

thegfpd.org
Joined March 2011
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  1. Feb 4

    Did you know that many states do not have a newborn screening that would detect rare diseases? Legislative sessions are convening and we encourage you to be a part of the change!

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  2. Feb 3

    Rare Disease week will be held virtually February 22 - March 2, 2022! We encourage you to head to to register today! And don't forget to have your stripes ready to post pictures that week!

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  3. Feb 2

    Join us for the ZSD Alliance Webinar Series. This event is a live, one-hour online webinar focuses on what is a medical home and its importance in caring for those with peroxisomal biogenesis disorder-Zellweger syndrome disorder. Register at : //bit.ly/3rU03k7

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  4. Feb 2

    Positive Looking with Your Child is a session at our conference that will teach families and professionals top tips and approaches to incorporate visual skills within your child everyday life, including setting up the environment ready to play and have fun.

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  5. Feb 1

    As we work to improve the lives of individuals with peroxisomal disorders, we recognize a big piece of that is legislative advocacy and championing research. You can help us make a difference by donating to our Rare Disease Day Fundraiser.

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  6. Jan 31

    The GFPD Diversity and Inclusion Committee promotes equity and inclusion starting at the board level. Our focus is our families. We represent and support all families impacted by peroxisomal. You can learn more at

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  7. Jan 27

    We are honored to benefit from the research completed by the renowned scientists of through the Scientific Advisory Board members. We thank these scientists for meeting with our GFPD families to further their knowledge of care for their

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  8. Jan 26

    We have chosen "Our Families" as our focus in 2022. This year we will work to empower our GFPD families and provide valuable resources for them. What resources would you like to learn about this year?

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  9. Jan 26

    Registration for the 2022 GFPD Family and Scientific Conference is coming soon! This will be our 8th biennial conference and a chance to learn, grow and celebrate our . Be on the look out for registration link soon! We look forward to seeing you in June!

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  10. Jan 24

    is home to Mike Wangler, one of the GFPD Scientific Advisory Board Members. Members of the Wangler Lab focus on studying genetic diseases. We thank these scientists for their tireless efforts to help our !

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  11. Jan 21

    2022 is a conference year for The GFPD! Help us make Warrior Camp at our conference a special experience for our Warriors through our Amazon Wish List.

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  12. Jan 20

    2022 Conference Speaker, Dr. Walter Koroshetz is a Director and has held leadership roles in a number of and NINDS programs. He will be discussing the various neurological disease developments for our scientific researchers and medical providers.

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  13. Jan 19

    2022 will be a year of HOPE! We will have several opportunities to join together and empower our and their families, while educating our communities and legislators. Follow us to stay up to date on details for each event.

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  14. Jan 18

    Our Scientific Advisory Board is comprised of highly trained researchers and physicians that work together with the Board of Directors to advise on best practices for guiding and supporting our GFPD families. We are so grateful for the time spent with each of them!

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  15. Jan 17

    Today, we celebrate the life and legacy of MLK and join with other advocates in this, the only U.S. federal holiday designated as a national day of service. We invite you honor Dr. King today by engaging in volunteer service in your community.

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  16. Jan 14

    We are excited to announce Joe Hacia, PhD, of the at will once again be our Scientific Chair for the 2022 GFPD Family and Scientific Conference. Thank you Dr. Hacia for all your work for the GFPD community!

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  17. Jan 13

    Since the inception of the GFPD, we have been committed to inclusion, diversity, and equity as we strive to fulfill our mission. Check out our blog for the latest information on our diversity initiatives.

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  18. Jan 12

    We are pleased to introduce you to Jayla Morrison, the 2022 GFPD Patient Ambassador. We are excited to share more about Jayla and her family in the coming months and are honored to be able to share their story! Give them warm welcome in the comments!

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  19. Jan 11

    DID YOU KNOW: Newborn screening is not standard in every state. YOU can change that by going to today to contact your members of Congress.

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  20. Jan 10

    Many patients with peroxisomal disorders need blood transfusions. January is National Blood Donor Month, and YOU can celebrate by donating blood to help hospitals meet patients' needs!

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