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Part of rare disease advocacy involves supporting diagnostic testing for newborns so that families can find the best treatments sooner. Read more about the diagnostic journey in Part 1 of the upcoming multi-part series on our blog: http://ow.ly/Zldd50yev48 pic.twitter.com/eldaGNOP6o
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Asking our medical community to remember to look for rare "zebras" and not always common "horses" when looking for diagnosis. So find your favorite striped shirt, watch your mailbox for your Rare Disease Day postcard and take a photo to share with your community!
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Post your photos and plans to help raise awareness on our Facebook event page, and we will share with the world the strength of our rare community! The theme of "
#ShowYourStripes" comes from the zebra as the official symbol of rare diseases. https://www.facebook.com/events/180548329826598/ …Prikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Peroxisomal disorders are only one of more than 7,000 rare diseases affecting 300 million people worldwide. Join the GFPD and our global partners,
@ZellwegerUk and@PBDCanada on#RareDiseaseDay, February 29th!pic.twitter.com/V6TeCG67ue
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Save the Date for our virtual roundtable, "GFPD in Pajamas"! Get comfy on Wednesday, February 12, and join us for new and seasoned families to get to know one another more.
#ZellwegerSyndrome#ZellwegerSpectrumDisorder#PBD#PeroxisomalDisorder http://ow.ly/FGx150y8m1E pic.twitter.com/3YulT2blwi
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If you would like to join a committee of the GFPD or are interested in learning more about the Board of Directors, please visit: https://thegfpd.org/join-a-committee …
#GFPDisFamily#GFPDisResearch#GFPDisHope#PBD#PBDZSD#peroxisomaldisorders#zellwegerspectrumdisorder#zellwegersyndromeHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
The Board of Directors guides the strategy of the GFPD as we strive to be a global leader as a patient advocacy group and a grassroots issue-driven nonprofit public charity.
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We also want to extend thanks to the returning members of our Board for their service: Dennis Carlson - dad of Chloe; Kelly Dauer-Hubschmitt - mom of Jack; Corin Chapman - mom of Max; Killian Bryce; David Lapidus; Chad Johnson; Brian Tims; Erica Golle; and Mike Collier.
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Please join us in welcoming the 2020 GFPD Board of Directors! Our newest members include even more parents of children affected by peroxisomal disorders; Natalie Clouse - mom of Gwendolyn; Chris Ostertag - dad of Hans; Meghan Meyers, mom of Brian, and Josh Mateffy, dad of Wynne.pic.twitter.com/OF3gd7unxm
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Get to know 2020 GFPD Patient Ambassador, Anna Violet! There's so much she and her parents want to share, but first let's start with the basics.
#ZellwegerSyndrome#ZellwegerSpectrumDisorder#GFPDPatientAmbassador#PeroxisomalDisorder#PBDWarriorhttp://ow.ly/ftDO50xYSVBHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Has your PBD Warrior had experience with braille?
#GFPDisEducation#visuallyimpaired#disability#blindness#accessibility#blind#ZellwegerSyndrome#ZellwegerSpectrumDisorder#PeroxisomalDisorderPrikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
January is
#NationalBrailleMonth. Did you know that braille Is not a global language? There are different braille systems for different languages. While there is a move toward braille uniformity, known as Unified English Braille (UEB), the languages themselves are still unique.pic.twitter.com/liMsqFsvPa
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Thanks to
@mfwangler for continuing to be a#raredisease advocate!#zellwegersyndrome#zellwegerspectrumdisorder#peroxisomaldisorder#careaboutrarehttps://twitter.com/mfwangler/status/1216121377608040448 …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
GFPD Executive Director, Melissa Bryce Gamble, reflects back on the accomplishments of 2019 and looks forward to 2020. The GFPD wishes all of our families a new year full of peace and hope. http://ow.ly/CE1R50xK2W2
#GFPDisFamily#ZellwegerSpectrumDisorder#ZellwegerSyndromeHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
As 2019 draws to a close, we reflect on our year of getting to know GFPD Patient Ambassador, Archer. Please read and share his mom's final thoughts. Thank you to Archer's family for sharing about a year in their life with a peroxisomal disorder.http://ow.ly/7NFF50xIHIF
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Happy Holidays from the GFPD Family! Wishing you and your family a peaceful Hanukkah, Christmas and Kwanzaa this holiday season.
#GFPDisFamilypic.twitter.com/f3xkAOpzWS
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You can make a difference and help support families around the globe who are affected by peroxisomal disorders. Every donation helps to fund education programs, medical research and family support services. http://thegfpd.org/donate
#ZellwegerSyndrome#ZellwegerSpectrumDisorderpic.twitter.com/gXQ60K8TUPHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
This
#GivingTuesday, join us to fund vital programs that help families facing a new diagnosis, continued medical research and collaboration, and educational opportunities for GFPD families.#GFPDisHope Donate today! http://thegfpd.org/donate pic.twitter.com/Id25GCPu3W
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