Ebony Wort (above) is currently having chemotherapy for multisystem LCH, her bone marrow is affected.

Joshua has been fighting LCH for over 2 years

Volunteer: Would you like to volunteer? Could you help? H-UK is a voluntary Charity to ensure 100% of scarce funds is spent on research and helping people with Langerhans Cell Histiocytosis (LCH) and HLH. If you can help please get in touch.

Contact us on 07527 166185 or send an email to info@histiouk.net

Become a Member

If you would like to become a member of Histiocytosis UK to receive newsletters and updates, send your details to info@histiouk.net

Thank you to the family of Mr Bains who kindly donated money for this website in memory of George.

 Freya, multisystem LCH

1st - 7th June 2009 . Do something special GET INVOLVED click here 

Langerhans Cell Histiocytosis (LCH) and Hemophagocytic lymphohistiocytosis (HLH) - Together we can make a difference.

Histiocytosis UK was set up in January 2009 to raise awareness of the diseases, Langerhans Cell Histiocytosis and HLH. In addition, we aim to raise funds for research into these diseases and once enough money is raised we will put out a call for proposals - an independant scientific review board will decide on the best projects to fund, with the best chance of success.

Histiocytosis UK wants to thank Binza (and family), Nico and Steve for their genorosity - and the donation that helped establish H-UK.

Histiocytosis UK is a voluntary Charity run by volunteers. This ensures 100% of scarce funds are spent on research and helping patients, families and carers of those affected by Langerhans Cell Histiocytosis and Hemophagocytic lymphohistiocytosis.

In less than a month we have set up this website and have organised various fundraising events across the UK and Ireland. We are very excited about 2009! and with your help we can make a difference to patients and their families, here in the UK. If you want to help us with our work, fundraise or anything else that you feel would help this cause, please do no hesitate to contact us.

Anne Devenney with her MP, Brian Jenkins at the House of Commons, February 25th 2009, to highlight the problems faced by patients with a rare disease, in particular HLH. Anne is an amazing person and is doing everything she can to raise awareness of HLH

One of our trustees (Jan Cormack), our volunteer fundraising manager (Lisa Kneale) and Anne Devenney (Camerons mum) went to the House of Commons for the offiicial launch of Rare Disease UK, on the 25th February 2009. For a full outline of their work, please go to http://www.raredisease.org.uk 

Currently people affected by rare diseases do not have a coherent strategy for care and support. Many individuals have difficulties accessing high quality care and services, in many cases due to the lack of communication and coordination of services that are sometimes already in existence. A new parliamentary working group was established at the parliamentary reception and the group includes, Mark Todd (Lisa Kneales MP) and Brian Jenkins (Anne Devenneys MP). They will be highlighting the issues faced by patients with a rare disease in Parliament. We will continue to work with and support Rare Disease UK. If you would like to help in this area by contacting your local MP, please get in touch info@histiouk.net If you have any problems that need highlighting please contact us - we are here to help.

Anne raised the issue of protocol studies and the decline in children, being put into medical trials for HLH. On behalf of Wendy Dawber, Histiocytosis UK highlighted the problems faced by adult patients with LCH, these include ; misdiagnosis, the lack of specialist centres in the UK, funding for treatment from a different Primary Health Trust and no guidelines in place for the time between diagnosis and when treatment starts; for adults with LCH. Some adult patients are waiting too long and this needs to be changed. If you would like to help with any of the issues raised above, please contact info@histiouk.net

Newsletters : If you would like to share your story, achievements, or have any information that you would like to be included in our bi-annual newsletters, please contact our voluntary newsletter editor, Liz info@histiouk.net

Awareness: We aim to raise awareness of HLH and LCH. If you would like help with any press releases in your area, or national newspapers, please contact our Press Release Officer - info@histiouk.net . Liz has several years experience as a journalist and we are delighted to have her working with us.