MPNEsupport Org 802492-1069, Sweden

Melanoma Patient Network Europe

Last update 18th October 2019 BR

MPNErare 2019The challenge of being rare.

25th- 27th October 2019

Mercure Hotel MOA Berlin

Stefanstr. 41, 10559 Berlin, Germany

and

Charité Campus Virchow

Hörsaal / Lecture Hall 6
Seminar rooms 5 + 6
Mittelallee 10
Charité Campus Virchow-Klinikum

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.

MPNErare2019 will focus on the particular needs of these patients and the challenges of being rare when it comes to accessing treatment and clinical trials.

It is our ambition as MPNE to raise awareness for and knowledge of rare Melanomas- such as uveal, paediatric, mucosal, acral and familial Melanoma- as this is the most effective way to keep patients with rare Melanomas reaching our community safe. 

Meet like-minded people and discuss what we as advocates can do to improve the outcomes of patients with rare Melanomas in Europe.

Attend MPNErare2019

• a 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
• understand the particular challenges that come with having a rare disease
  
• meet others who share your condition and work together on solutions

​​​​​​

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.

We are looking forward to seeing you in Berlin!

MPNE organisers

Bettina, Fredrik, Gilliosa and Violeta

Logistics

Anne Wispler, Hans Boetel

Scientific sub-committees

Ocular Melanoma

Iain Galloway, Andrew Evans, Dick Plomp, Jo Gumbs

Mucosal Melanoma

Petya Zyumbileva, Natasha Vaz Liti

Acral Melanoma

tbc

Paediatric Melanoma

​Irina Popleaca

We thank for their support

We particularly thank the Charité Comprehensive Cancer Center for providing the meeting rooms for Saturday and Sunday and fantastic organisational support. 

​
​​