​​​​MPNE Workshops tackle topics of particular interest

to our advocacy community.


MPNE principles

1. patients first

2. solutions, not problems

3. data, not opinions

and

4. if you don't do it, no one will.


so these are WORKshops, so the aim is not to have lectures in a smaller group.

Rather, we need to produce concrete ideas that actually WORK for our NETWORK- so we are after concrete suggestions how we can directly use the power and possibilities of our network to improve the situation of Melanoma patients in Europe. Considering the diverse backgrounds and experiences of our attendants, there should be plenty of room for coming up with great new ideas!







MPNE 2017 workshops    

Friday, 17th March 2017, 16.00- 17.30

Rooms indicated at the Conference Venue


Workshop 1 - Quality of Life in Melanoma

Facilitator: Bettina Ryll


Faculty: James Larkin, Royal Marsden, London and Mark Larkin


It is generally accepted that Quality of Life is important and that Melanoma therapies can have a positive or a negative impact on this Quality.

Much less accepted is what Quality of Life actually concretely means for a Melanoma patient, how it changes over time- let alone how to measure it.

James and Mark have been working on just that: how do we measure what matters to patients over time? And how can we use this to improve the Quality of the Lives of Melanoma patients?



Workshop 2-  Side effects in Melanoma

Facilitator: Gilly Spurrier

Faculty: Rebecca Chandler, UMC, Sweden

              Michel Walravens, Belgium

 

Side effects are a recurrent topic on our patient forums, causing much anxiety and suffering for patients. In this workshop, we will discuss ideas how to better help our community to detect, report and treat side effects. For a better life for Melanoma patients on therapy!

Some of you will remember Rebecca who works at the Uppsala Monitoring Centre- remember Vigiaccess? Rebecca would like to discuss some new ideas of hers about how to best report side effects with us.

Michel works in a very different field- Rhumatology- but has developed a tool for early detection and diagnosis of disease- and that looks very much like what we would like to do! 



Workshop 3- Mystical Statistical- Statistics for Melanoma advocates

Facilitator: Kay Curtin, MPNE 

Faculty: Corneel Coens, EORTC, Belgium


Have you ever attended a Melanoma meeting or conference and had a complete brain freeze when they start to talk stats? What is a spider plot? A swimmer plot?! Why do I feel fear when I hear Kaplan Meier curve, is median really just average, can I trust this information and how it was compiled at all?!! Join Corneel and Kay in this explanation of all things that make statistical so mystical :-)

Corneel works as a statistician at the EORTC and has a special knack for making statistics really interesting!








Workshop 4-  Rare Melanomas

Facilitator: Iain Galloway

Faculty: Christian Ottensmeier, Southampton

A chance for Melanoma patients with rare Melanomas- ocular, acral and mucosal- to get answers to their questions, find out what has happened in MPNErare in the last year and discuss projects for 2017! 

Find out what European Reference Networks are, why the matter for us and hear about their launch last week in Vilnius.





​We are looking forward to seeing you!



SAVE THE DATE

Fair Trials in Rare Melanomas

MPNErare 2017

6th- 8th October 2017, Netherlands 

Take and tell- pharmacovigilance

workshop program


reminder

workshop sessions  run in parallel,

so UNFORTUNATELY, you can only

participate in one!

European Reference Networks Melanoma

Please 

rank workshops in the order of preference on the online form you receive. We will do our best to allocate you to the workshop of your first choice! 

Last update 5th March, 2017 BR

MPNEsupport Org 802492-1069, Sweden

Melanoma Patient Network Europe

MPNE 2017


see you 

Friday 17th March, Thon Hotel Bristol Stefanie

16.00- 17.30