No-one should die of Histiocytosis

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.

UPDATES Coronavirus (COVID-19).

The health and safety of our Histio Community – is importance to us.
We will be closely monitoring the developments of the coronavirus (COVID-19).

Several of you have raised questions about how COVID-19 may affect histio patients the following papers are available online and may assist you:

FAQ HLH COVID 2020 final

General information can be obtained from the Public Health England website – this is going to be the most up to date:

Should you have any questions about your specific health concerns or if you begin to show symptoms of fever, cough, chest pain, and shortness of breath, we encourage you to contact your local medical team/General Practitioner or Consultant to discuss specific questions you may have.


Great Sadness

Dr Johannes H. Visser

Johann Visser, who sadly died on the 20th December 2020, was a consultant Paediatric Oncologist in Leicester and then Cambridge. Johann was a modest and gentle man and a dedicated and caring clinician, who made an enormous contribution to treatment of Langerhans Cell Histiocytosis (LCH) in the UK and world-wide.

He became a trustee of Histiocytosis UK in 2014 having previously served on the Board of Trustees at the Histiocytosis Research Trust. Johann contributed hugely to the Trust’s activities with excellent, common-sense advice. He also played a major role in preparing the information booklet on Paediatric LCH that Histio UK distributes to doctors throughout the UK and in preparing material for the Histio UK website

He worked tirelessly to improve the treatment of histiocytosis patients in the UK, setting up and running the national Histiocytosis Advisory Group. This is a computer-based forum for doctors treating histiocytosis patients. Any doctor needing advice can discuss a patient with doctors who are experts in histiocytosis, including of course Johann, at fortnightly “meetings”. His clinical insight and advice will be desperately missed by everyone in the UK, who treats histiocytosis patients. Johann was also the lead investigator in the UK for the LCH IV international clinical trial. Because LCH is such a rare disease, such international trials are the only way in which new treatments can be properly assessed on enough patients to obtain reliable data. Running the trials is a laborious and time-consuming duty that Johann took on to the great benefit of all LCH patients. Recently kinase inhibitors, drugs such as Vemurafenib, that target the mutations in LCH have been developed and have raised the hope that they might revolutionise treatment of the disease. However, the introduction of any new therapy must be carefully assessed in clinical trials. Johann took part in the first international clinical trials of kinase inhibitor therapy in children, showing that these drugs may have a useful role in treatment of the disease and can be safely administered to children.

Johann will be sorely missed by friends and colleagues throughout the UK and the international community of clinicians and scientists, who work on histiocytoses. It is a tragedy that such respected and influential figure has been taken from us at the early age of 52 years and the thoughts of everyone who knew him will be with his family at this terrible time. 


HISTIO UK – In it Together 

In it Together

We are incredibly pleased to announce that Histio UK have been successful in our application to the National Lottery Community Fund. The fund has awarded Histio UK the sum of £36, 560 for our Histio Communities Project: Histio Connect – Let’s Talk – an inclusive online discussion platform for each of the different Histiocytic disorders.

The platform will provide our “Histio Champions” the opportunity to chat, share their voices, their stories, achievements and memories enabling the opportunity to raise awareness, inspire others, learn more about other parents, patients, families, supporters, and volunteers who shape this rare community.
Our thanks to all our Histio Community Champions and HM Government for making this possible.

What is Histiocytosis

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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 Programs. Please make a donation today. Thank you.

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