Version 4th October

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
The challenges of helping patients with rare Melanomas
Gilly Spurrier and Violeta Astratinei, MPNE
1.2 Ocular Melanoma
Dick Plomp, MPNE Ocular/Rare and Stichting Melanoom, NL 
1.3 Acral Melanoma
David Vanes, UK

1.4 Pediatric Melanoma
Suzanne Pasmans, pediatric dermatologist, Erasmus MC, Rotterdam, NL

16.00 – 16.30    Coffee break

16.30 – 18.00    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.

Bettina Ryll, MPNE
Ben Willcox, Birmingham Uni CIIC team, author of a MOOC on Cancer Immune Therapies, UK

19.00– 20.00   World Café Reception at Restaurant Twelve — meet old friends, make new ones and brainstorm together about solutions to pressing Melanoma issues!

Please note the restaurant is only a short walk away from the conference venue.
20.00        Welcome Dinner at Restaurant Twelve

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.
Ellen Kapiteijn, LUMC, NL
3.2 Genetic Testing in Ocular Melanoma
Helen Kalirai,​ Royal Liverpool University Hospital​, UK
3.3 Liver-directed therapies
Ioannis Karidys, ​University Hospital Southampton, UK
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.
Chair: Violeta Astratinei

4.1 A clinical perspective
Sophie Piperno-Neumann, Institut Curie, France
4.2 Faster Access, better data- MAPPs- Medicines' Adaptive Pathways to Patients
Bettina Ryll, MPNE
4.3 Interacting with your national HTA body
Eric Low, former CEO Myeloma UK, UK
4.4 Power in numbers — a patient-built registry for Ocular Melanoma.
Andrew Evans, MPNE
4.5 Discussion
Violeta Astratinei

Further Reading
EMA workshops on single arm trials

12:30 – 14:00    Lunch

14.00 – 15.30          Session 5 — 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.
Chair Gilliosa Spurrier

5.1 Pediatric Melanoma
Types of pediatric Melanomas, diagnosis and treatment and a strategy for a European Registry. 

Miranda Dierselhuis, Princess Maxima Utrecht, NL

5.2 Pediatric melanoma and Familial Melanoma: a Dutch case experience

Auke Beishuizen and Remco van Doorn, Erasmus MC Rotterdam, NL
5.3 Clinical trials in pediatric Melanoma- caught between childhood and adult cancers
Michel Zwaan, Erasmus MC Rotterdam, NL
5.4 Horizon2020 Share4Rare- a platform for pediatric cancers
Begonia Nafria-Escalera, Share4rare, Spain
5.5 Discussion
Gilliosa Spurrier

Further reading
Melanoma in children:
SIOPE- a European cancer plan for children and adolescents

15.30 – 16.00    Coffee  

16.00- 17.00   Session 6 — European Reference Networks (ERNs)
What are European Reference Networks and why do they matter for Melanoma patients? How can we get involved (ePAGs)?

Chair Bettina Ryll

6.1 Introduction to ERNs
Iain Galloway, MPNE
6.2 ERN for solid tumours — EURACAN
Sophie Piperno-Neumann, Institut Curie, France
6.3 ERN for pediatric oncology - ExPO-r-Net
Michel Zwaan, Erasmus MC Rotterdam, NL
Further reading
European Reference Networks (ERNs) including EURACAN, the ERN for rare solid tumours, and ExPO-r-Net, the ERN for pediatric oncology.

17:00 – 18.00. Session 7- Interactive Masterclass on innovative clinical trial designs
Eric Low and Michel Zwaan

​Moderation: Bettina Ryll

19.00– 20.00    Reception at Restaurant Twelve

20.00     Conference Dinner at Restaurant Twelve

Sunday 8th October
Advocacy Sunday

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. Science for advocates - Journal Club
Chair Bettina Ryll

8.1 Introduction: How to read scientific papers
Bettina Ryll, MPNE
8.2 Not all Melanomas of the eye are created equal- why does it matter?
Integrative Analysis Identifies Four Molecular and Clinical Subsets in Uveal Melanoma
Martine Jager, LUMC, NL
8.3 How does a mole in the eye become cancer?
GNAQ and GNA11 mutations and downstream YAP activation in choroidal nevi
Pieter van der Velden, LUMC, NL
8.4 Discussion
Discussants- Iain Galloway, Andrew Evans, Dick Plomp, MPNE

10:30 – 11:00    Coffee break

11:00 – 12:00  Advocacy in Action
Chair Dick Plomp                          

9.1 A European Melanoma network- principles and how do we work together?
Bettina Ryll, Gilly Spurrier, Violeta Astratinei- MPNE
9.2 Patients generating evidence for their own best care
Jo Gumbs, OcuMel UK, UK
9.3 The challenges of building a Rare Patients group
Dick Plomp, Stichting Melanoom, NL

12.00- 12.30 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

Melanoma Patient Network Europe

We thank for their support




​MSD- pending


Last update 4th October BR

   Restaurant Twelve

    Bargelaan 180
    2333 CW Leiden
    071 870 0265



A fair deal for rare melanomas

6th- 8th October 2017

LUMC (Leiden University Medical Centre)

​Collegezaal 4 

Albinusdreef 2, 2333 ZA Leiden, The Netherlands

The challenges

of having a rare form of Melanoma

Taking important decisions with little evidence

Improving care

for patients

with rare conditions

in Europe.

Clinical trials in

rare Melanomas

   Restaurant Twelve

    Bargelaan 180
    2333 CW Leiden
    071 870 0265

MPNEsupport Org 802492-1069, Sweden