Melanoma Patient Network Europe

Last update 1st February 2021

MPNEsupport Org 802492-1069, Sweden

MPNErare 2021The challenge of being rare.



Rare Melanomas

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.

MPNErare 2021 online

  • the traditional meeting for European patients with rare forms of Melanoma- Melanoma of the eye (ocular Melanoma), paediatric or familial Melanoma, Melanoma that started on the inner surfaces of the body (mucosal Melanoma) or Melanoma that started on hand or feet (acral Melanoma) and anyone interested in rare Melanomas, due to COVID in an online format
  • updates on the separate forms of rare Melanomas
  • find out more about MPNE's burden of Melanoma work planned for 2021- including our Research pilot on the Share4Rareplatform! 


Attendance of MPNErare 2021

conference language is English

Who should register?

Melanoma patients, carers and advocates, in particular with rare forms of Melanoma or with a special interest in rare Melanomas.

Please note that attendance requires registration.

Not a Melanoma advocate but still interested to attend? Please contact us

What does it cost?

Participation is free. 

We are looking forward to seeing you online! 

MPNE organisers

Bettina, Fredrik, Gilliosa and Violeta