MPNEsupport Org 802492-1069, Sweden

Melanoma Patient Network Europe

MPNErare2017A Fair Deal for Rare Melanomas.

6th- 8th October 2017

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?

Attend MPNCErare2017

• a meeting for European patients with rare forms of Melanoma- Melanoma of the eye (ocular 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
• understand the particular challenges that come with having a rare disease
  
• meet others who share your condition and work together on solutions

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Attendance of the conference

conference language is English

Who should apply?

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

Please note that attendance is upon application only.

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

What does it cost?

Accepted advocated will receive free registration and accommodation for 2 nights at the conference venue. Extra nights are at participants' own expenses.

​Travel needs to be arranged for by participants themselves but will be reimbursed up to a maximum amount of 300 € for economy/ 2nd class travel after full attendance of the conference. 

Please look for the best deals and keep the original receipts of your bookings. 

Don't want to travel alone? Use the MPNE facebook group to find fellow travellers!

Cannot afford to pay ticket upfront? Please contact us.
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Last update 25th September 2017 BR