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Hermansky-Pudlak Syndrome Network UK


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Hermansky-Pudlak Syndrome (HPS) is a genetic metabolic disorder that results in Albinism, a bleeding disorder, visual impairment with light sensitivity (photophobia), and rapid involuntary movement of the eyes (nystagmus).  Many people with HPS develop life limiting lung disease (pulmonary fibrosis).  Some develop an inflammatory bowel disease similar to Crohn’s disease.


The Hermansky-Pudlak Syndrome Network UK (HPS Network UK) is a ‘not for profit’ support and advocacy group for people and families dealing with Hermansky-Pudlak Syndrome (HPS) and those seeking testing for the syndrome


We offer support to individuals and families in the spirit of friendship. We provide information to those affected by HPS and their doctors and attend events to raise awareness.  We are staffed by volunteers.

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Disclaimer


This Website is intended to provide information. It is not intended to, nor does it, constitute medical or other advice. Readers are warned not to take any action with regard or otherwise based on the information on this website without first consulting their doctor(s).

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