Hermansky Pudlak Syndrome Network Inc
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 The HPS Network is a 501c3 non-profit serving families with Hermansky-Pudlak Syndrome and other albinism-related syndromes. Our facebook page is designed to provide news to our community. THE HERMANSKY-PUDLAK SYNDROME (HPS) NETWORK'S MISSION IS TO PROVIDE ADVOCACY, FELLOWSHIP, EDUCATION AND HOPE TO INDIVIDUALS AND FAMILIES AFFECTED BY HPS. WE FUND AND FACILITATE RESEARCH. WE DEVELOPE AND PRODUCE MATERIAL AND RESOURSES FOR HEALTHCARE.
Founded
1992
2500
X (Twitter)
1009
Address
Oyster Bay
Home | Hermansky-Pudlak Syndrome Network Conference Ad Hoc Group for Medical Research welcomes Congress Community Champions for Disability Health Challenge finalist What is HPS. HermanskyPudlak Syndrome HPS is a genetic metabolic disorder characterized by albinism visual impairment and a platelet dysfunction that results in prolonged bleeding. Some people with HPS may develop other complications depending on the HPS gene involved these include inflammatory bowel disease pulmonary fibrosis and kidney disease. Currently there are 11 known types of HPS.
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From Social media
News about Hermansky Pudlak Syndrome Network Inc from their social media (Facebook and X).
- Hermansky Pudlak Syndrome Network Inc
- 2025-05-30
What’s in my bag: chronic illness edition 💕 Have you ever wondered what an HPSer might like to keep with them in their bag. (fb) ... more
Liked (25) Commented (10)
- Hermansky Pudlak Syndrome Network Inc
- 2025-05-29
Please help us congratulate Carmen on her recent lung transplant. (fb) ... more
Liked (183) Commented (40)Discussions
Odpovědí v diskuzi
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What are the most effective strategies for raising awareness about Hermansky-Pudlak Syndrome and its associated complications within the general public and medical communities?
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Brooklyn Simmons
2 days ago
Odpovědí v diskuzi
1
How can our community better support families navigating the challenges of Hermansky-Pudlak Syndrome and related albinism disorders in their daily lives?
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Brooklyn Simmons
2 days ago
Latest reviews
Together, we can make a real impact in communities around the world. Help us bring hope and support.
Feeling inspired by the incredible work the HPS Network is doing to support families affected by Hermansky-Pudlak Syndrome! Together, we can raise awareness and provide hope to those in need. 💙 #HPSNetwork #CommunitySupport
Brooklyn Simmons
Product Manager
Just read about the advances in research for HPS – so grateful for organizations like the HPS Network that are dedicated to making a difference in the lives of those living with this condition. Keep up the amazing work! 🌟 #Advocacy #Hope
Brooklyn Simmons
Product Manager
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