Through our work, we aim to support DC patients and their families. Our activities include:


  1. Providing general advice, and helping to guide families through finding the right treatment, care and support through the National Health Service (NHS).

  3. Providing telephone support to patients, their families, medical practitioners, and other interested parties. (Please contact us at

  5. Providing medical fact sheets that patients, potential patients, and families can share with their GPs and other relevant healthcare professionals.

  7. Providing lifestyle advice and support to improve overall health and wellbeing.


Please contact us at with any questions and queries.