Join us for our 2024 Family Conference! What is HPS? Hermansky-Pudlak Syndrome (HPS) is a genetic metabolic disorder, characterized by albinism, visual impa .
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HPS Network is a volunteer self-help, nonprofit support group dedicated to assisting individuals and families dealing with Hermansky-Pudlak Syndrome (HPS) and related disorders. As an organization with a mission to support those affected by HPS, they provide valuable resources and information to help individuals understand and manage the condition. Their website features comprehensive information about HPS, including its characteristics, lung complications, lung transplant considerations, and action plans.
They offer a media library with various references, allowing individuals to acquire a better understanding of HPS. The HPS Network also focuses on advocacy, aiming to promote legislative changes and individual advocacy to improve the lives of those with HPS. Additionally, they actively participate in research and share their findings through Flavia's Journal Club section.
To involve individuals, they offer opportunities to donate and join the network. Furthermore, they organize events, conferences, and virtual meetings to create a sense of community and provide a platform for sharing experiences. Disclaimer: The information provided on their website is not medical advice, and individuals are encouraged to consult a physician before taking any action based on the information
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