Version 25th July
Friday 6th October
13:00 – 14:00 Registration and meet your colleagues over a cup of coffee
14:00 – 14:30 MPNErare2017 opening session
Welcome to our conference — Iain Galloway, MPNE Ocular/Rare
The Melanoma Patient Network Europe — Bettina Ryll, MPNE founder
14.30 – 16.00 Session 1 Introduction to Rare Melanomas
Introduction:What are rare melanomas? What do they look like? What are the challenges patients with rare melanomas meet? Get an overview of the different facets of rare melanomas.
1.1 Black swans — Introduction to rare Melanomas
What is melanoma? What is a rare melanoma? Which different forms exist? What are the challenges of being rare? Speaker tbc
1.2 Ocular Melanoma
Dick Plomp, MPNE Ocular/Rare and Stichting Melanoom, NL confirmed
1.3 Mucosal Melanoma
1.4 Acral Melanoma
1.5 Pediatric Melanoma
16.00 – 16.30 Coffee break
16.30 – 18.30 Session 2 Educational Session: Immune therapies
Immune therapies are currently changing the treatment of many cancers. This session will provide an in-depth overview on immune therapies: What they are; How they work; Which different forms exists (check-point inhibitors, TILs, vaccines) and where the challenges are, in particular for patients with rare forms of melanoma.
Christian Ottensmeier, Southampton tbc
Ben Willcox, Birmingham Uni CIIC team, author of a MOOC on immune therapies tbc
18:30 – 19:30 World Café Reception — meet old friends, make new ones and brainstorm together about solutions to pressing Melanoma issues!
20:00 Welcome Dinner
Saturday 7th October
Fair deals for Rare Melanomas
09:00 – 10:30 Session 3 — Ocular Melanoma
Chair Iain Galloway
3.1 The latest- state of the art treatment in Ocular Melanoma.
3.2 Genetic Testing in Ocular Melanoma
Sarah Coupland, UK tbc
3.3 Liver-directed therapies
3.4 Arguing with your Health Authorities
Screening and ongoing surveillance for Ocular Melanoma Patients in Scotland
Jenni Walker, MPNE ocular/rare
10:30 – 11:00 Coffee break
11:00 – 12:30 Session 4- The Rare Cancer Challenge: making far-reaching decisions when evidence is hard to come by.
Small patient populations and limited data sets pose challenges to decision-making at every level, from the way clinical trials are conducted, over how new medicines are approved, evaluated and ultimately, reimbursed. Gain a deeper understanding of why it is so hard to make good decisions when evidence is hard to come by.
4.1 Clinical perspective
4.2 Regulatory perspective
Francesco Pignatti, EMA, invited
4.3 Interacting with your national HTA body
Eric Low, former CEO Myeloma UK
4.4 Financing the unknown, a payer perspective
Ad Schuurman, ZIN tbc
Chair Violeta Astratinei
EMA workshops on single arm trials
12:30 – 14:00 Lunch
14:00 – 15:30 Session 5 — Interactive Session on Clinical Trial Design and Research
with Eric Low and others
15.30 – 16.00 Coffee
16.00 – 17.30 Session 6 — Pediatric Melanoma
In very rare instances, Melanoma also occurs in children. Accessing promising new treatments is particularly challenging for children as most therapies are initially only approved for adults.
6.1 Pediatric Melanoma
Types of pediatric Melanoma, diagnosis and treatment.
Birgit Geoerger, IGR tbc
6.2 Clinical trials in pediatric Melanoma- caught between childhood and adult cancers
Andrea Ferrari, Italy, tbc
6.3 Advocacy for Pediatric Cancers
Anita Kienesbergerg, SIOPE
Chair Gilliosa Spurrier
Melanoma in children: https://www.healio.com/hematology-oncology/pediatric-oncology/news/online/%7B314765f3-e0fc-4a6a-b793-cc7f24e43a34%7D/pediatric-melanoma-occurrence-is-rare-yet-most-common-type-of-skin-cancer-in-children
SIOPE- a European cancer plan for children and adolescents
17:30 – 18:30 Session 7 — European Reference Networks (ERNs)
What are European Reference Networks and why do they matter for Melanoma patients? How can we get involved (ePAGs)?
7.1 Introduction to ERNs
Ariane Weinman, Eurordis tbc
7.2 ERN for solid tumours — EURACAN,
Jean-Yves Blay, Centre Léon Bérard, Lyon, France TBC
7.3 ERN for pediatric oncology - ExPO-r-Net
Chair Gilliosa Spurrier, MPNE
European Reference Networks (ERNs) including EURACAN, the ERN for rare solid tumours, and ExPO-r-Net, the ERN for pediatric oncology.
19.00– 20.00 Reception
20.00 Conference Dinner
Sunday 8th October
Introduction to MPNE as a network- how do we work together? What is an effective network? How do we inform and educate patients? Get inspired by examples of successful advocacy!
09:00 – 10:30 Session 8 Advocacy in Rare Melanomas
8.1 A European Melanoma network- principles and how do we work together?
Bettina Ryll, MPNE
8.2 Running an effective patient forum
How to ensure that information provided on the forum is correct and up-to-date, where to find scientific literature and how to access it.
Gilly Spurrier and Violeta Astratinei, MPNE
8.3 Power in numbers — a patient-built registry for Ocular Melanoma.
Andrew Evans, MPNE
8.4 Advocacy example
8.5 Advocacy example
Chair Dick Plomp
10:30 – 11:00 Coffee break
11:00 – 12:30 Session Practical issues in Rare Melanomas- abstract session
Abstracts to be submitted by applicants, selection based on relevance for general audience
12.30- 13.00 Conference Summary and Closure
Iain Galloway and Bettina Ryll, MPNE
13:00 Lunch & Departure
Looking forward to seeing you all in Leiden!
Andrew, Bettina, Dick, Gilly, Iain and Violeta from MPNE
Got something to share? Submit your abstract
Surviving Melanoma in Europe.
Access to prevention, early detection and effective treatment for all.
Melanoma Patient Network Europe
Last update 30th July 2017 BR
What can we do?
6th- 8th October 2017
LUMC (Leiden University Medical Centre)
Albinusdreef 2, 2333 ZA Leiden, The Netherlands
of having a rare form of Melanoma
Taking important decisions with little evidence
with rare conditions
Clinical trials in