MPNErare 2019 Program

Melanoma Patient Network Europe

MPNErare 2019 25th- 27th October, Berlin

www.melanomapatientnetworkEU.org

MPNErare2019, 25th- 27th October 2019, Berlin

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Location Accommodation and venue for Friday Mercure Hotel MOA Berlin Address: Stephanstraße 41, 10559 Berlin, Germany Phone: +49 30 3940430 Venue Saturday and Sunday Charité Campus Virchow Postal address: Augustenburger Platz 1, 13353 Berlin Phone: +49 30 450 - 50 on campus: Hörsaal / Lecture Hall 6 Seminar rooms 5 + 6 Mittelallee 10 Charité Campus Virchow-Klinikum

Organizer MPNEsupport Fjällbo Selknä 152 75597 Uppsala Sweden Responsible Bettina Ryll Gilliosa Spurrier Violeta Astratinei Fredrik Östman

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Welcome to MPNErare 2019, Our second conference for rare Melanomas.

Patients with Rare Melanomas face unique difficulties with regards to access to diagnosis, expertise and treatment.

We have seen that rare Melanomas have often been excluded from Melanoma trials and existing data sets are small, leading to a general scarcity of clinical data. This means both lack of insight as well as restrictions in access to potentially effective treatments in many countries today. These leave patients with rare forms of Melanoma with fewer treatment options, in particular in the metastatic setting.

While every Rare Melanoma has its specific challenges, they also have commonalities: many challenges are linked to the fact of being rare and it now turns out that different Melanoms share common genetic features, such as the BAP1 syndrome that comes with an increased risk for both uveal as well as skin Melanomas or GNAQ/11 mutations that are found in uveal, mucosal as well as very rarely on other Melanomas.

Our MPNErare2019 will therefore focus on what we as network can do to mitigate the problems for patients with Rare Melanomas, how we can overcome challenges linked to the fact of being rare and how we can exploit commonalities for better treatment strategies for all.

We are looking forward to a constructive weekend!

Bettina, Fredrik, Gilly and Violeta

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Program Version 19th October 2019

IMPORTANT: 2 different meeting venues 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 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 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

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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)

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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 the hotel 8.45 we leave for the Charité Virchow Campus 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 Melanomasand 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

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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 13.30 – 15.00

Lunch at the venue 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 Europethe 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

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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 themwhat 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

Off-site Conference Dinner

'Zur Letzten Instanz' Waisenstrasse 14-16, 10179 Berlin

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Tel: +49 30 242 55 28

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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, MPNE Share4Rare- Violeta Astratinei, MPNE 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 MPNErare2019, 25th- 27th October 2019, Berlin

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And before you leave Your feed-back is valuable to us- it helps us organise events that bring European Melanoma advocacy forward.

Reimbursement of travel expenses for economy/ second class travel up to a maximum of 300 Euro after the event against travel receipts.

You will receive an electronic reimbursement form after the event.

Safe travel and looking forward to seeing you again soon!

MPNE principles 1.

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Patients first.

Solutions, not problems.

Data, not opinions.

You got the job!

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Good to know currency in Germany EUR. Cash machines can be found in the arrival area at the airports. dress code Business casual, comfortable shoes Berlin has 2 airports: Tegel and Schönefeld Logistics online under: http://www.melanomapatientnetworkeu.org/mpnerare-2019-logistics.html addresses Please note the different meeting venues for Friday (MOA Hotel) and Saturday/ Sunday (Charité Virchow campus).

Accommodation and venue for Friday Mercure Hotel MOA Berlin Address: Stephanstraße 41, 10559 Berlin, Germany Phone: +49 30 3940430 Venue Saturday and Sunday Charité Campus Virchow Postal address: Augustenburger Platz 1, 13353 Berlin Phone: +49 30 450 - 50 on campus: Hörsaal / Lecture Hall 6 Seminar rooms 5 + 6 Mittelallee 10 Charité Campus Virchow-Klinikum Off-site dinner on Saturday 'Zur Letzten Instanz' Waisenstrasse 14-16, 10179 Berlin

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phone: +49 30 242 55 28

Incidentals The conference budget covers workshop participation, accommodation and meals; please note that you will be responsible for all other extra costs.

Contact during the conference Best on slack Bettina Ryll +46-722297272 Gilliosa Spurrier +33-676318349 Violeta Astratinei +31-646699527 Fredrik +46 738073103

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MPNErare2019 was made possible through the support of

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