Xp Support Group

Xp  Support Group

The XP Support Group is a UK Charitable Trust whose aim is to relieve the needs of people with Xeroderma Pigmentosum and other related conditions.XP is an extremely rare genetic skin condition for which there is no cure. It affects less than 100 people in the UK and is characterized by an extreme sensitivity to […]

Yellow Brick Road Project (Ybrp) Inc

Yellow  Brick Road Project (Ybrp) Inc

The Yellow Brick Road Project is a parent-led quest to cure HNRNPH2 mutations, our children’s ultra rare genetic neuro-developmental disease.

Xlp Research Trust

Xlp  Research Trust

David and Allison Hartley from Romsey, Hampshire, UK established the XLP Research Trust after their four sons were diagnosed with XLP1 in 2003. In the London based Institute of Child Health Research Report 2004, there was a comprehensive feature on XLP and the Hartley boys. This suggested that a gene therapy cure would be possible […]

Wolfram Syndrome Uk

Wolfram Syndrome UK are the only support group and website in the UK for this condition. This site was started in 2010 until then the only website associated with WS was a worldwide site. There was no easy to read information available and no real support, as many medical professionals had or still have never […]

Womb Cancer Support Uk

Womb  Cancer Support Uk

We are a small voluntary not for profit organisation based on Isle of Bute off west coast of Scotland but we cover the whole of UK.Our aim is to offer support to women who have been diagnosed with womb cancer and also to raise muchneeded awareness of the most common gynaecological cancer and the 4th […]

Worster-Drought Syndrome Support Group

Worster-Drought  Syndrome Support Group

To offer support to other families affected by Worster-Drought Syndrome.To raise awareness of Worster-Drought Syndrome with professional workers and other interested individuals.To raise awareness of Worster-Drought Syndrome Support Group.Support and promotion of any research into Worster-Drought Syndrome

Vasculitis Uk

Vasculitis  Uk

Vasculitis UK has been a Registered UK Charity since 1992. Charity No. 1019983Everything is to be found here about Vasculitis UK, the charity: our aims, goals and objectives, the history, the people who run it, our finances, how you can join and how you can support and be involved in running Vasculitis UK. There is […]

Vhl Uk/Ireland

Vhl  Uk/Ireland

VHL UK/Ireland Charity Objectives:To relieve the charitable needs of persons who have von Hippel-Lindau Syndrome (VHL) and similar genetic conditions such as Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) and Birt-Hogg- DubĂ© Syndrome (BHD) and their families and carers in the UK and Ireland for the public benefit in particular but not exclusively by:Providing support […]

Williams Syndrome Foundation Limited

Williams  Syndrome Foundation Limited

The Williams Syndrome Foundation was formed as a Registered Charity in 1980 with the aims of promoting research and funding, and providing help and support for families with affected children. The incidence of Williams Syndrome is approximately 1 in 18,000. The Foundation hears of increasing numbers of cases each year – the figure rises as […]

Wilson’S Disease Support Group Uk

Wilson'S  Disease Support Group Uk

WDSG-UK was founded in the year 2000 by Caroline Simms (PhD), and Linda Hart, to provide a support network for Wilson’s disease patients, their families and friends. Membership is open to all and covers the cost of our annual newsletter.The Wilson’s Disease Support Group – UK (WDSG-UK) is an all volunteer organisation which strives to […]