If you are a patient, relative or carer seeking medical advice about histiocytosis (Langerhans cell histiocytosis, Erdheim Chester disease, Juvenile Xanthogranuloma or Rosai Dorfman disease), you can access a network of UK specialists by emailing matthewcollin@nhs.net or trung.ngyen@nhs.net. You will need to state in writing that you give permission for us to contact your doctor (GP or specialist) and ideally provide their contact details. You can also find more information online at the following sites: 

histiouk

histiocytesociety

erdheim-chester

How to join the UK Histiocytosis Registry

If you are a patient with histiocytosis and you would like to join the UK Histiocytosis Registry then welcome ! Please email sarah.pagan@nhs.net with your contact details and we will send you information about how to join. You can find out more about the registry here: ukhr.org

Genetic testing of histiocytosis

NHS England Genomic Laboratory Hubs now offer genetic testing of biopsies for gene mutations that cause histiocytosis. Histiocytosis has its own selected panel of genes on the GLH Test Directory. Medical teams should be able to access this through local pathology services.

Sending patient samples to the lab for the UK Histiocytosis Registry Please send an email to sarah.pagan@nhs.net or if there is no patient information, to sarah.pagan@newcastle.ac.uk to notify us that a sample is coming and provide any tracking numbers available. If possible, please avoid the end of the week/Friday to post samples. Please send to the following address [insert link to contact delivery address page]