Melanoma Patient Network Europe will organize MPNErare 2017 — a meeting for European patients with rare forms of Melanoma — from 6th-8th October 2017 in Leiden, the Netherlands.
Melanoma is a cancer originating from melanocytes, the body’s pigment producing cells, and is mostly found on the skin. However, on rare occasions, Melanoma can also occur in the eye (Ocular/Uveal Melanoma — approximately 4000 new cases across Europe each year), the inner surfaces of the body (Mucosal Melanoma — 1000/yr), on hand and feet (Acral Melanoma — 5000/yr) and in children (Pediatric Melanoma — 1000/yr).
Patients with Rare Melanomas face unique challenges: Rare conditions are often diagnosed late or incorrectly, with limited access to specialists and centres of excellence. Genetically and clinically distinct from adult cutaneous (skin) Melanoma, existing treatments are either less efficient or have not been systematically tested in Rare Melanomas. Small patient populations mean slow recruitment for clinical trials and the general scarcity of clinical data is causing restrictions in access to potentially effective treatments in many countries today. This leaves patients with rare forms of Melanoma with few options, in particular in the metastatic setting.
MPNErare2017 will focus on the particular needs of these patients and the challenges of being rare when it comes to accessing treatment and clinical trials. Meet like-minded people and discuss what we as advocates can do so that also rare Melanoma patients get a fair deal.
Application and program at http://www.melanomapatientnetworkeu.org/program-mpnerare2017.html
Follow MPNE on Twitter @MPNEurope and MPNE Ocular/Rare @MPNEocular