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MPNErare2019 mobile

Melanoma Patient Network Europe

MPNErare2019 25th- 27th October, Berlin

www.melanomapatientnetworkEU.org

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

How to reach the Virchow Campus

Virchow Campus

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

Organizer MPNEsupport Fjällbo Selknä 152 75597 Uppsala Sweden

Welcome to MPNErare 2019,

and the compact mobile program.

We are looking forward to a constructive weekend!

Bettina, Fredrik, Gilly and Violeta

Program Version 19th October 2019

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

14.30 –16.00 Session 1- Thinking rare Melanomas

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

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?

17.30- 19.00 Session 3 Essential Anatomy UMCURE team and Martina Rooijakkers, MPNE, confirmed

19.15–20.00 World Café Reception-

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 the hotel 8.45 we leave for the Charité Virchow Campus

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

10' + 10' 4.1 Family matters- Familial Melanoma and the Genomel Initiative Nelleke Gruis, LUMC, confirmed

10' 4.2 The Nevus network Children born with Giant congenital nevus have a higher risk to develop Melanoma. 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 Pieter van der Velden, LUMC, confirmed

20' 5.3 Surviving Uveal Melanoma- an MPNE position c? 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 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? Hans-Dieter Volk, Charité Berlin and RESTORE

15.00- 16.00 Session 7- GNAQ/11 mutations

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

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

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 • Tel: +49 30 242 55 28

Please pay attention to the logistics that will be announced in Berlin!

Sunday 27th October Patient advocates only

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- update from the Mission Board meeting 21/22nd October. Read more Bettina Ryll, MPNE

15' 11.3 Horizon 2020 updates

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

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!

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 • 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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