MPNErare 2019​
The 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.
Program
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
Venue
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 Yaspo, Max 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
Venue
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.​
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
Discussion
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
​