HistioUK - In it Together

Our research programmes provide a beacon of hope for the many children and adults battling Histiocytosis, to ensure this research continues in these difficult times we ask you to pledge your support by making a donation today. THANK YOU.
A message from some of the Clinicians & Researchers that your donation supports.

No-one should die of Histiocytosis

Histio Voices Matter!

Thank you all for the tremendous hard work and initiatives that help to maintain Histio UK’s Information and Research Programmes.

We will continue our work towards early diagnosis, effective treatment and a cure.

“No-one should die of Histiocytosis”


A Ground-breaking Partnership Project – Histio UK partners with the HistioNode Research Project funded by the Medical Research Council.

Prof. Matt Collin talks to us & our Histio UK PPPIE Panel (Patient, Parent, Public Involvement & Engagement Panel) about this ground-breaking project covering all aspects of Histiocytosis.
Please listen now and continue to support Histio UK in enabling this amazing partnership research.
Thank You

A Preliminary Policy Proposal

 ‘Salvage of histiocytic neoplasms causing life-threatening disease with mitogen-activated protein kinase (MAPK) inhibitors’ has been submitted to NHS England on 2nd November. This advises the NHS to develop a commissioning policy for access to Vemurafenib, Dabrafenib, Cobimetinib and Trametinib.The next step is a review by the Specialised Commissioning Panel to determine whether the policy will be adopted onto the work flow.  From this point it will take at least 12 months for NHSE to develop a commissioning policy after wide consultation with all of the relevant stake holders, including a number of patients, families and Histio UK.


What is Histiocytosis

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News Updates

No-one should die of Histiocytosis.

Despite the misery it causes, histiocytosis is too rare a disease to have generated substantial research in medical circles. Unfortunately, for every child or adult fighting for his or her life, the pain and suffering are just as severe for children and adults afflicted with other better known disorders receiving funding. For the children and adults battling these illnesses, there is now reason to hope. To ensure the research and information support work continues, we ask for your help, to complete the funding puzzle.

Share Your Voice -Your Story.


Research – together we will find a cure!

Histiocytosis UK is dedicated to promoting and funding scientific research into uncovering not only the causes of all histiocytic diseases, which include Langerhans’s Cell Histiocytosis and Haemophagocytic Lymphohistiocytosis, but also ensuring early diagnosis, effective treatment and a cure.

Histio UK also aims to support patients and their families as well as raise public and professional awareness of histiocytic disorders. Its team of Trustees include the UK’s leading paediatric LCH and HLH specialists.

Learn More

Fifi's story - By Mum Tiffany Rumble

Paediatric Langerhans Cell Histiocytosis Symptoms, Diagnosis, Treatment and raising essential funds for research.

About 50 children in the UK develop LCH each year. It can affect children of any age, and is more common in boys than in girls.


Your support is more vital than ever, to ensure that we can continue to deliver our Research and Information Programmes. Please make a donation today. Thank you.

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