5 minute read
MPNErare2019 mobile
by MPNE
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
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
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