Sightline Directory

The directory for services aimed at helping blind or partially sighted people

Hermansky-Pudlak Syndrome Network UK (HPS Network UK)

User rating: 5 stars

Opening Times:

Contact us by email or via our website.

Map for Hermansky-Pudlak Syndrome Network UK (HPS Network UK)

Organisation details

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.

Services offered:

  • Support groups

5 user reviews

Una

User rating: 5 stars

Excellent organisation and excellent website with a huge amount of information, which benefits parents, patients and professionals.

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Annette Ferguson

User rating: 5 stars

Excellent website, everything you need to know about HPS, is well set out and easy to understand. Well done to this organisation for their great work..

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carolanne kert

User rating: 5 stars

Hps network helped me when they was testing my son for hps and still continue to give me support even though he doesnt have hps but a platelet disorder

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Carolyn richardson

User rating: 5 stars

Great source of reliable information and support.

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Tara Smith

User rating: 5 stars

Most informative... thank you so much for raising awareness and having all the information for people to see.

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This organisation was verified on 4 April 2017