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MPNErare 2019

The challenge of being rare.


25th- 27th October 2019

Mercure Hotel MOA Berlin

Stefanstr. 41, 10559 Berlin, Germany


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





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




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


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. 

Logo Charite.png


Version 19th October 2019


IMPORTANT: 2 different meeting venues


  • Please note that Friday, we will be at Hotel MOA Berlin while on Saturday and Sunday, we are guests at the Charité Berlin Virchow Campus!  

Friday 25th October


Mercure Hotel MOA Berlin

Address: Stephanstraße 41, 10559 Berlin, Germany
Phone: +49 30 3940430


Day 1

13:00 – 14:00    Lunch and Registration 

14:00 – 14:30    MPNErare opening session

Welcome to the 2nd edition of MPNErare!

Who are we as Melanoma Patient Network Europe and how do we work? Why do we have a special conference for rare Melanomas? How can awareness about rare Melanomas in the wider Melanoma community help keep rare Melanoma patients safe?

14.30 – 16.00   Session 1- Thinking rare Melanomas

Our favourite format- extended time with one scientist and time with time for questions!


5' 1.1 Introduction and moderation

Bettina Ryll


40' 1.2 Cancer genomics and Systems Biology of Cancer: the basics for precision medicine

Marie- Laure YaspoMax Planck Institute for Molecular Genetics, Berlin, confirmed


40' 1.3 Germline mutations in uveal Melanoma

Understand the difference between germline and somatic mutations and their relevance for testing, follow-up and treatment choices on the example of uveal Melanoma.

Cindy Chau, LUMC, Netherlands, confirmed

16.00 – 16.30    Coffee break

16.30 – 17.30    Session 2  Precision Medicine in Rare Melanomas at Charité Berlin

'The right medicine to the right patient at the right time'- but what does it concretely look like when it comes to rare Melanomas?


20' 2.1 Uveal Melanoma

Serge Leyvraz, Charité Berlin, Germany, confirmed


20' 2.2 Mucosal Melanoma

Group Ulrich Keilholz, Charité Berlim, Germany, confirmed


20' Discussion: How do we implement precision medicine in clinical care?


Further reading

Integrated genomic profiling expands clinical options for patients with cancer

17.30- 19.00 Session 3 Essential Anatomy

After the success in Brussels this year- back, extended and with a growing collection of anatomical models.

UMCURE team and Martina Rooijakkers, MPNE, confirmed

19.15– 20.00   World Café Reception- meet old friends, make new ones and brainstorm together about  To reduce the impact of XXXX MELANOMA!

20.00        Welcome Dinner Mercure Hotel MOA Berlin (same venue) 


Saturday 26th October


Charité Campus Virchow
Postal address: Augustenburger Platz 1, 13353 Berlin
t: +49 30 450 - 50

on campus:

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


Day 2


Breakfast at hotel 


8.45 we leave for the Charité 

09:15 – 10:00    Session 4- Paediatric and Familial Melanoma 


20' + 10' 4.1 Family matters- Familial Melanoma and the Genomel Initiative

​Occasionally, more than one member in a family can be diagnosed with Melanoma, raising the suspicion of Familial Melanoma and certain germline mutations (CDKN2A, CDK4, POT1, TERT and BAP1) have been described to increase the risk for Melanomas- and in the case of e.g. BAP1, that is both for uveal Melanoma as well as cutaneous Melanoma!


A good introduction from the GenoMel website can be found here, the site is full of great links for anyone interested in the topic.

Nelleke Gruis, LUMC, confirmed


10' 4.2 The Nevus network

Children born with Giant congenital nevus have a higher risk to develop Melanoma. Through Share4Rare, a Horizon2020 project MPNE is project partner in, we are delighted to have established contact with the Global Nevus community!

Benjamin Löffler, Naeuvs Netzwerk, Germany, confirmed 

​10:30 – 11:00    Coffee break

11:00 – 12:30    Session 5- Primary ocular Melanoma and prognostication 


​20'+ 10' 5.1 Treatment of the primary in ocular Melanoma

Martina Angi, Istituto Nazionale Tumori, Milano, confirmed


20' + 10' 5.2 Thinking about metastasis
UM development is a stepwise process and intrinsically heterogeneous- what does this mean for treating in the metastatic setting? 
Pieter van der Velden, LUMC, confirmed

20' 5.3 Surviving Uveal Melanoma- an MPNE position 

About 50% of all uveal Melanoma patients will develop metastases, preferentially in the liver. In the absence of effective standard of care in the metastatic setting, local control as well as experimental medicine are of utmost importance. What does good look like from the patient perspective?

MPNE advocates

12:30 – 13:30    Lunch at the venue

13.30 – 15.00   Session 6- Treating Metastatic Uveal Melanoma today


30'+ 10' 6.1 Treatment update and what can European Reference networks do for patients with rare Melanomas?

Sophie Piperno-Neumann, Institut Curie, Paris, confirmed



20' 6.2 Overview of treatment options for uveal Melanoma in Europe- the MPNE survey

Oskar Näsman, MPNE 


20'+ 10' 6.3 And what's coming next? Advanced therapies: what are they and what can we expect in cancer?
First research shows that HER2-CART cells might also be effective in uveal Melanoma. Find out what CART cells and other advanced therapies are!

Hans-Dieter Volk, Charité Berlin and RESTORE


15.00- 16.00 Session 7- GNAQ/11 mutations

GNAQ/11 mutations do not only occur in uveal Melanoma but also other rare Melanomas, like mucosal and primary leptomeningeal Melanoma as well as blue naevi. How does that mutation lead to Melanoma and how can it be targeted?


5' 7.1 Introduction to the session- thinking mutations. 

Bettina Ryll


15' 7.2 From nevi to uveal melanoma, mutation mechanisms of GNAQ/11.

Pieter van der Velden, confirmed


15' 7.3 Targeting GNAQ/11

First clinical trials are testing agents against GNAQ/11 mutated tumours- what have we learned so far?

Richard Carvajal, confirmed 


Discussion: treating Melanomas with GNAQ/11 mutations 

Further reading

GNA11 Q209L Mouse Model Reveals RasGRP3 as an Essential Signaling Node in Uveal Melanoma

16.00 – 16.30    Coffee


16.30- 17.30 Session 8- Mucosal Melanoma

What makes Mucosal Melanoma different? And what are the latest learnings?

Rich Carvajal, confirmed



parallel session

16.30- 17.30 The new MUM guideline tbc



17.30- 18.30  Plenary Session 9: 'RODS': 'Return on Data Sharing' and how patients are to benefit from their own data

Data is considered the 'new gold' in healthcare- and there is as much enthusiasm as vagueness in the discussion as everyone tries to leverage the perceived but undefined potential. And everyone wants patients to supply, share or donate data. While everyone has a very strong opinion about why patients should share data with them- what about the patients themselves? What type of data do we want to see collected? What are the problems we are trying to solve? Who owns the data and controls access to it? What does it take to make sure that the collected data is of use to as many people as possible? 

Through our experience with our latest Horizon2020 project, Share4Rare, and together with our project partner, the Duchenne community we are refining what good data practice looks like- join us for an interesting discussion! 


10' Introduction

​10' 9.1 FAIR Data principles

What are the FAIR data principles and why are they important for patients?

Rob White, MPNE, confirmed

10' 9.2 Learning from a different field- handling environmental data
Otso Valta, chairman of Avoin, a Finnish nonprofit IT association, confirmed


10' 9.3 The experience from the Duchenne community

Suzie-Anne Bakker, World Duchenne organisation 


20' Discussion: 'RODS': can we define principles of what good data sharing looks like from the patient perspective?

Chair Rob White, MPNE, confirmed

20.00     Conference Dinner

'Zur Letzten Instanz
​Waisenstrasse 14-16, 10179 Berlin   •   Tel: +49 30 242 55 28 


Sunday 27th October

Patient advocates only


Want to discuss something with a smaller group? We've got the possibility for parallel sessions! 

09:00 – 10.30   Advocacy Session 10


10.1 Fake news, how to run an effective patient forum and write great patient info, introduction to the V2A4 tool we developed for Share4Rare! 

Gilly Spurrier, MPNE


10.2 Dealing with conflict in patient advocacy- what to do when the other side does not play fair?

Tamas Bereczky, HIV activist, invited

Iain Galloway, MPNE


10.3 There's more than one way to getting what you want

Jo Gumbs, OcuMel and MPNE

10:30 – 11:00    Coffee break

11:00 – 12:30  Advocacy Session 12


20' 11.1 Trans-border access to clinical trials
Eric Näsman, MPNE


10' 11.2 Update from the Horizon Europe Mission Board for Cancer

​In June 2019, the European Commission launched five major European research and innovation missions that will be part of Horizon Europe, the next EU research and innovation programme, one of them on cancer. Each mission has a mission board of 15 individuals and a first deliverable to propose concrete targets and timelines for each mission by the end of 2019. Bettina joined the Cancer Mission Board in October and will update from the Mission Board meeting 21/22nd October.​

Read more

Bettina Ryll, MPNE


​15' 11.3 Horizon 2020 updates

Horizon 2020 was the until then largest research EU research and innovation program ever (about 80 Billion EUR) and will now be followed by the even larger Horizon Europe program. MPNE takes currently part in 2 Horizon2020 projects, one on metastatic uveal Melanoma, UMCURE2020, and one on rare paediatric conditions for paediatric Melanoma, Share4Rare. We will update about the progress of the programs.


UMCURE2020- Bettina Ryll

Share4Rare- Violeta Astratinei


15' 11.4 Rare cancer initiatives to be aware of
European Reference Networks- ERNs and European Patient Advocacy Groups- ePAGs, Joint Action for Rare Cancers- JARC, ​Rare Cancer Europe- RCE
Iain Galloway, MPNE




12.30- 12.45 Conference Summary and where to see you in 2020!

13:00 Lunch & Departure

Looking forward to seeing you all in Berlin!


The MPNE team

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