HPS Network @HPSNetwork
Hermansky-Pudlak Syndrome, a type of albinism that causes low vision as well as a bleeding disorder. It can cause a Crohns-like GI problem/pulmonary fibrosis hpsnetwork.org worldwide Joined May 2011-
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Donna rocking these Public Roundtable meetings for ATS!!! #hermanskypudlaksyndrome #raredisease #pulmonaryfibrosis
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Town Hall is tonight at 8pm EST!! Bring your questions, comments, and concerns directly to Donna herself! #hermanskypudlaksyndrome #beinformed #bepartofthesolution #octobermood
🍁 October Check-In for the HPS Community! 🍁 As we near year-end, let’s rally for HPS awareness, research, and each other. Together, we can finish strong! What’s one goal you’d love to see happen before 2024? Drop it below—every step counts. 💪 #HPSAwareness #OctoberGoals
Happy Birthday Carmen!! She does so much for so many! Our support call leader, TIPS coordinator, translator, liaison for those moving stateside for transplant, puts up with all of our shenanigans and more, we love you! #hermanskypudlaksyndrome #forcarmen
Huge thank you to Sheila Adamo for running our second Mother’s Workshop of the year this past Sunday for mom’s of children with HPS! We appreciate you more than you we can express!
Adrieliz Hernández, second grade student of the Cruz Maria Gomez De Malavé de Añasco school, won the Blind Barbie for her dedication, performance and serving as a model for an explanatory class. Congratulations!
Team HPS at NORD also includes Becky attending virtually! Mom pick up duty while listening to how AI can help the rare disease community with future advocate leader, HPSer, and her daughter, Leanna! #NORDSummit #rarediseases #hermanskypudlaksyndrome
Donna speaking to over 240 medical and dental students at Columbia University! #hermanskypudlaksyndrome #hpsawareness #columbiauniversity #beinformed
Where is Team HPS this week? Donna is at the NORD Summit in Washington D.C. with Ashley! Today was a meeting for leaders using the IAMRARE registry which is what we are using for our Datank! #hermanskypudlaksyndrome #NORDsummit #rarediseases
Sunday motivation! #selfcare #ourstory #goodvibesonly #hermanskypudlaksyndrome
Our Town Hall Meeting will be on October 30th at 8pm EST! Get updated, ask questions! #beinformed #bepartofthesolution #hermanskypudlaksyndrome #octobermood
This report will help shape legislative initiatives that support persons with Albinism and HPS! #albinism #hermanskypudlaksyndrome #humanrights #unitednations
Impact on Social Life Seeking input: How do social attitudes affect persons with albinism & HPS in their daily lives? Share your experiences to inform the report. #AlbinismAwareness #HumanRights #Inclusion
It’s #GlobalHandwashingDay! Viral germs are out and about! So wash those hands!!!
Call for Input Stakeholders are invited to contribute insights on human rights issues affecting persons with albinism & Hermansky–Pudlak Syndrome. Help shape the upcoming report. #Inclusion #DisabilityRights #Albinism#HermanskyPudlakSyndrome#UnitedNations
UN Visit from Muluka-Ann Miti-Drummond The Independent Expert on human rights for persons with albinism and HPS visited the U.S. & Puerto Rico from Oct 7-18, 2024. Purpose: assess initiatives supporting these communities. #HumanRights #Albinism #HPS #UnitedNations
Sunday Motivation!!! #hermanskypudlaksyndrome #fallfeels #octobermood #ourstories
Have an easy fast to our Jewish friends.
It’s #InternationalDayofTheGirl and this year it’s about the digital generation and young people becoming active digitally to raise the diversity of girls’ voices!
Today is #WorldSightDay! It is important to protect our eyes and vision and raise awareness of vision impairment and blindness. Eye health services should be accessible, available, and affordable for all children!
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Balozi Anthony Mukhen... @AnthonyMukhena
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FSMR - RespiFIL 🫁 @RespiFIL
1K Followers 695 Following ⚠️ Compte officiel inactif Filière de santé des maladies respiratoires rares #maladiesrespiratoiresrares #maladiesrares #filieredesante #rarediseases #FSMR
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5K Followers 162 Following I won’t be posting here anymore. if you are interested in what I have to share catch up with me @ipfdoc.bsky.social #GoodLuck
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National Organization... @RareDiseases
40K Followers 3K Following #NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
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2K Followers 424 Following Dad of two remarkable kids. Founder of https://t.co/GkrwXhfkoy & https://t.co/eWtcezWeJc. Works with families affected by neurological diseases & cancer. Firefighter. Baseball & hockey.
NOAH @NOAHAlbinism
1K Followers 99 Following NOAH’s mission is to act as a conduit for accurate and authoritative information about all aspects of living with albinism and to provide a place of acceptance.
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EURORDIS-Rare Disease... @eurordis
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