We are a group of parents with children born with HH and as families went through a long period of feeling isolated and despondent. It was via a wide world support group on the internet that we finally made contact with other families in our situation and found the support we needed. This growing group has provided friendship, understanding and comfort as well as extensive information about the latest and effective treatments and a deeper overall understanding about the condition.

As a group it is our vision that there will in time be early diagnosis, treatment and cure of HH as a matter of a child’s life. This group will act as an information resource to hasten this outcome but until that time we want to provide mutual support and practical help to families and individuals going through these challenging experiences. We believe that there are and will continue to be substantial numbers of people affected by HH in the UK, although information can be access through the internet, there will be some people who don’t have access on this technology which could be missing out on the support they vitally needed. Working with neurologists, endocrinologists and other service providers, we aim to provide leafleted information about HH, contact details and other resources to be available in the appropriate clinics throughout the UK. We will also approach the significant medical professionals to approve and distribute this information directly to patients and their families. Once contacted, we aim to listen, share experiences and put families in touch with each other on a regional basis (if they so wish).

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