HPS is a very rare syndrome that is inherited from both parents. It is a complex condition that is challenging for individuals and families. For this reason we offer information and mutual support to individuals and families affected by HPS, and to the doctors and other health professionals involved in their care. We would like to meet people and families within the UK who either have HPS or are affected by it, as well as those who want to be tested for it.
We offer support to individuals either face to face, by phone, email, or via ‘closed’ social network groups for people who have HPS and their families.
We provide information to those affected by HPS, and also to their healthcare professionals when requested.
By providing information we aim to help individuals and families to become self advocates in their healthcare.
When requested we work with those affected by HPS and their doctors to seek healthcare that is appropriate for someone with HPS.
To raise awareness we attend events and medical conferences relevant to the symptoms and treatment of HPS and the care of those affected by HPS, eg: Haematology, Ophthalmology, etc.
We are currently working with doctors and researchers to develop a quicker and reliable route to HPS testing in the UK.
We seek to work with health professionals to develop both standards of care and coordinated referral routes within the NHS for those affected by HPS.
About the Hermansky-Pudlak Syndrome Network UK
Who we are
The Hermansky-Pudlak Syndrome Network UK, or HPS Network UK, was set up during the summer of 2010. We are a not for profit support and advocacy group staffed by volunteers. We are affiliated to the US based HPS Network Inc. We are not doctors or healthcare professionals. For the most part we are people directly affected by HPS.