The NET Patient Foundation is dedicated to supporting anyone affected by any neuroendocrine cancer diagnosis. We are also very aware that some of the rarer forms of neuroendocrine cancer have significantly less resource. One of these rare forms is a skin neuroendocrine carcinoma – Merkel Cell Carcinoma (MCC). We have been working on understanding the needs of the MCC Community, liaising with UK experts to deliver useful information and support to this group of patients and their loved ones. To date we have a global survey, short and simple, that we are asking anyone affected by MCC to complete, we have made contact with online communities to help support completion of the survey, and 200 HCP’s. We have produced a 12 page guide for patients and this will be disseminated in the next few weeks across the UK. We have a dedicated space on our website for MCC information, a support nurse in the community and free psychological therapy available.
It has also been important to actively seek support from research organisations, skin cancer organisations and industry.