MPNEsupport Org 802492-1069, Sweden

Melanoma Patient Network Europe

Watch the documentary

Tell us about your Melanoma

clinical trial experience

If you are a Melanoma patient or carer and you live in the European Union, we want to hear from you!

GetReal is a project that aims to develop ideas for new, alternative trial designs that better incorporate patient perspectives and real-world data (how a treatment works in real life, rather than in traditional clinical trials) into drug development. To do this, we need understand the experience of patients and carers with traditional clinical trials and ask for ideas about what could make trials better in the future.

Find out more and take part in our anonymous

Thank you for your efforts- the survey is now closed.

Separate invitations for PRE-MPNE 2015 will be sent out with the main conference registration



Last update 16th April 2015, BR

Being part of the solution.

MPNE 2015

Annual conference

24th- 26th April 2015​

Boulevard Adolphe Max 98

1000 Brussels - Belgium

Pre- MPNE 2015

Thursday- 23rd April

arrival MPNE core group- advocates involved in 


Dinner MPNE core

Friday- 24th April

8.30- 12.30
MPNE core meeting- for advocates involved in MPNE projects

  • Planning MPNE actions for 2015/ 2016, outcome to be presented on Sunday

12.30- 13.30
Lunch for MPNE core

Main conference

Friday- 24th April

morning- mid-day
arrival of conference participants


13.30- 15.15
Workshop I

Dermoscopy- Part I What does a good skin exam look like?
Dermoscopy workshop for Melanoma Patient Advocates.
Zrinjka Patar. Ana-Maria Forsea, Monika Gniadecka, Selma Ataly

Workshop II
Therapy options in Stage IV Melanoma.

Pascal Wolter, Belgium.

Workshop III
Psychosocial support in Melanoma.

Stefania Bassino, Italy

GetReal- Focus session

for GetReal working group

15.15- 15.45

15.45- 17.30
Workshop IV 

Dermoscopy- Part II with practical exercises

Workshop V
Therapy options for Stage III Melanoma.

Dirk Schadendorf, Germany.

EMA Focus group with Stage IV patients and carers
How do Melanoma patients assess risks and benefits of novel therapies?


18.00- 19.00
Mix & Match- get to meet old friends and new faces!
Gilliosa Spurrier, Mélanome France

Welcome Dinner- Marivaux Hotel


Saturday- 25th April
MPNE advisory board
‘The risk of not taking risks in Melanoma’

from 8.15

8. 45- 9.00

9-00- 10.30

Session 1- Risk

1.1 How much evidence and how much risk? Introduction to the conference

Bettina Ryll, MPNE

1.2 The risk in Melanoma Stage IV
Lori Murdoch, Stage IV Melanoma patient, UK

1.3 New hopes and new risks- the oncologist’s perspective on innovative medicines in Melanoma.
Bart Neyns, UZ Brussels, Belgium

1.4 Who should decide which risk to take?
Pan Pantziarka, The George Pantziarka TP53 Trust, UK

10.30- 11.00
11.00- 12.30
Session 2- No risk, no innovation.

2.1 Innovative medicines and risk.

Michel Goldman, Université Libre de Bruxelles, previously: IMI director, Belgium

2.2 Risk / benefit assessment- the regulatory perspective. 

Jorge Camarero, Spanish Agency of Medicines and Medical Devices, Spain

2.3 Innovation and risk- the industry perspective.
Brendan Barnes, EFPIA, Belgium

2.4 BIG data and innovation.
Nathalie Kayadjanian, Science Europe, Belgium
12.30- 14.00
Lunch buffet

14.00- 15.30
Session 3- Measuring and mitigating risks.

3.1 The earlier, the better- learning in Early Access Programs

Edna Venneker, mytomorrows, Netherlands

3.2 Concerns about risk when procedures accelerate- parallel scientific advice in Australia 
Andrew Bruce, Amgen, previously: Medicines Australia, Switzerland

3.3 Risk- is it a matter of time?

Geert Bakker, Inspire2live, Netherlands

3.4 Incorporating patient risk/benefit assessment into regulatory decisions
Francesco Pignatti, EMA, UK

15.30- 16.15
Coffee break

16.15- 16.45

Session 4- GetReal
Sarah Garner, CASMI, UK 

The GetReal initiative
Results of the survey and the focus group

16.45- 17.45
Podium discussion- GetReal!

Real-world data in clinical trials

Poster session and reception

Conference Dinner
Dinner speech: Bob Philllips


Sunday- 26th April 
ADvocacy DAy

Sunday will focus on MPNE advocacy activities-

  • MPNE 2014 in review
  • Presentation of  Friday’s MPNE core meeting results: actions planned for 2015/ 2016
  • short reports from Friday’s workshops

8.30- 10.30

Welcome back and MPNE in 2014 15'

Bettina Ryll, MPNE 

Summary of the Friday workshops 15'

Gilly Spurrier, Melanome France, France/ MPNE

Focus on Romania- one year later 10'

Ana- Maria Forsea, Romanian Skin Cancer Foundation, Romania/ MPNE

Networks driving research- The Melanoma susceptibility project 15'
Antonella Romanini, ACM, Italy/ MPNE

The EUPATI- experience 10'

Violeta Astratinei, Melanom Romania, Netherlands/ Romania/ MPNE

Overcoming cancer drugs shortages - the role of volunteer networks and the media 15'
Vlad Voiculescu,
The Missing Cancer Drugs Initiative, Austria

10.30- 11.00
Coffee break

11.00- 12.45
MPNE strategic planning 

Introduction- 5'


How to find THAT clinical trial 10'

Bettina Ryll, MPNE

How to make the MPNE network work- our communication strategy. 10'
Lori Murdoch, Melanoma Network UK, UK

Knowledge is power- our education strategy. 10'

Gilly Spurrier, Melanome France, France

12.45- 13.00

Summary of the meeting and closure

Bettina Ryll, MPNE

.00- 14.00
Buffet lunch and departure


​We are looking forward to a productive and exciting MPNE 2015!