Hermansky-Pudlak Syndrome Network UK (HPS Network UK)

User rating: 5 stars

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

Organisation details

Description

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

  1. Una

    26 February 2013

    User rating: 5 stars

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

    Report review 1 as inappropriate content

  2. Annette Ferguson

    26 February 2013

    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..

    Report review 2 as inappropriate content

  3. carolanne kert

    26 February 2013

    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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  4. Carolyn richardson

    26 February 2013

    User rating: 5 stars

    Great source of reliable information and support.

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  5. Tara Smith

    27 February 2013

    User rating: 5 stars

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

    Report review 5 as inappropriate content

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  • This organisation was verified on 4 April 2017