Program MPNE 2019

ANNUAL MPNE CONFERENCE FOR EUROPEAN MELANOMA ADVOCATES

 

​22nd- 24th March 2019

arrival 22nd in the morning, we start early in the afternoon

 

Location 

NH Brussels BLOOM 
Rue Royale - Koningsstraat 250, 1210 Brussels, Belgium


Internal pre-meetings- all invitation only

 

Thursday, 21st March

 

ECAB working group

Planning meeting ECAB (internal)

14.00- 18.00

 

MPNEhubs

19.30 MPNE hubs working dinner 

 

Friday, 22nd March
8.00- 12.00 MPNEhubs annual meeting

 

 

Friday, 22nd March
 

13.00- 14.00

QuickStart to MPNE2019, especially recommended for MPNE new-comers

 

The goal of this session is to make sure that everyone has the necessary knowledge to follow the rest of the weekend and we recommend every new-comer to attend. 

We do appreciate that also everyone else wants to make sure they REALLY have the Melanoma basics. However, if you have already attended a number of QuickStarts- this will be like the one you attended at your first visit. 

We obviously continuously tweak and refine the content to be even clearer and more memorable- feel free to copy for your own conferences- but please, don't send us another feed-back 'This was just like last time, I already knew all of this?'- because that is JUST the intention!

 

​Welcome to the conference and MPNE

Bettina Ryll

Melanoma in a nutshell

Bettina Ryll

Know your stage!

The Melanoma stage defines treatment options and prognosis, so is critical to understand. This is the compressed MPNE version on staging!

Violeta Astratinei and Gilly Spurrier, MPNE

MPNE 2019- the short version

What to expect from this weekend with brief introduction to sessions

Fredrik Östman and Bettina Ryll, MPNE

 

QuickStart Ocular Melanoma: parallel 

Latest developments in metastatic uveal Melanoma

 

​​14.00- 15.00
Welcome Coffee

Meet your colleagues and time to hang up your posters! 

 

Parallel session and workshop program. Under development and sessions likely to move: something you miss, something you want- now is the time to tell us. 

 

Watch the program develop in real time    here

 

Block 2

15.00- 15.50

 

Block 3

16.00- 16.50

 

Bloc 4

17.00- 17.50

​​

18.00- 19.00 Fireside chat

The future in Melanoma

 

19.15 

Advocacy Speed Dating with Kacie

For those of you who are already getting worried- our advocacy speed dating is the most fast & fun way to get to talk Melanoma advocacy to a large number of people in a very short amount of time. 

Coming for the first time? You'll have met the Melanoma advocate 'dinos' by the end of the session! 

Been here many times before? You will know who is new, have heard some new perspectives and know whom to help!


20:00 Welcome Dinner

 


Saturday, 23rd March
 

8.00- 9.00 Breakfast 

 

9.00- 10.30
Session- What to do when therapies fail? Understanding resistance to targeted therapies work in progress

On our forums, we regularly see patients who want to believe that the initial impressive results to targeted therapy (BRAFi and MEKi inhibitors) are permanent- and who are distraught and unprepared when resistance sets in.

Understand the concepts of primary, acquired and reversible resistance and the current thinking about strategies how to overcome those. What are the next promising treatments in the pipeline? 

 

Introduction to the topic

 

 

 

10.30- 11.00 Coffee


11.00- 12.30

Session- Tackling resistance in Immune therapy- the latest work in progress

Immune therapies have changed Melanoma from a deadly disease to one with real hope for survival. Unfortunately, not for everyone. So this session will provide an introduction into our current understanding of why immune therapies don't work for everyone and look into what is coming NEXT to tackle those problems.

 

Resistance to immune therapies- an overview

Aurélien Marabelle, Gustave Roussy Paris, France invited

Further reading: 

https://www.nature.com/articles/bjc2017434.pdf

 

 

Combining intra-tumoral with systemic immune therapies
Julia Katharina Schwarze, UZ Brussels, Belgium, tbc

 

Increasing your chances- Neo-epitope specific TCR (T-cell receptor) gene therapy

Successful immune therapy needs the right type of neo-epitopes that allow T-cells to recognise cancer cells to destroy them. At the moment, it is chance what type of neo-epitopes a patient has- anything one can do about that?

John Haanen, NKI Amsterdam, Netherlands, confirmed

 

Cancer vaccines

Christian Ottensmeier, Southampton, UK cancelled

 

​Summary

13.00- 14.00 Lunch

 

14.30- 16.00

Clinical Trials

14.30- 15.15

Session- Cross-border ACCESS to clinical trials 
Progress in Melanoma therapies has been phenomenal- however, at the edge, where need is highest and patients are out of other options, access was and remains a constant struggle. This session will focus on how to find out which therapies are promising, understand what clinical trial designs really mean for you and how to access them. 

 

Clinical trials as means to access innovative therapies.

speaker tbc

 

Accessing clinical trials abroad- a recent experience

Erik Näsman, Sweden, confirmed

 

Access schemes for clinical trials abroad- the Nordic experience

While most healthcare systems unfortunately still don't support participation in clinical trials abroad- some do. A positive example!

Steinar Aamdal, Norway, confirmed

 

15.15- 16.00

Meaningful surrogate endpoints for Melanoma clinical trials

Panel discussion

Bettina Ryll, MPNE

Alric Ruther, IQWiG, Germany, confirmed

Jorge Camarero, CHMP alternate, Spain, invited

 

16.00- 16.30 Coffee

 

​16.30- 18.00

Good clinical trials and where to find them.

  • Understanding clinical trials

  • How to find and choose a clinical trial

  • Overview of ongoing clinical trials in Melanoma

​​​

19.00 Poster competition and Reception

Present your favourite Melanoma advocacy project- past, present and future- on a poster! 

 

20.00 Conference Dinner 


Sunday, 24th March
Advocacy Day- closed program for patients and patient advocates only 

 

8.00- 9.00

Breakfast

please make sure you check out


9.00- 10.30

Session: Knowledge protects. Turning information into knowledge.

Education and knowledge are the essence of our network. This session will look into why it matters so much and how we as a network ensure that scientific information spreads accurately and fast, also across language borders. 

 

Pseudoscience. Beware the snake oil.

A topic Gilly is truly passionate about and after chairing one of the most successful sessions of the ESMO advocacy track 2018, a condensed version about how to distinguish real Science from pseudoscience- and why this is so critical for our community.

Gilly Spurrier, MPNE

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Simple is hard. VERY HARD. Medical information everyone understands.

Making the complexity behind medical research accessible is an art. Emma is determined to learn as much from patients as possible- and has developed a methodology to write accessible research abstracts. You can read the first examples from a workshop at the UMCURE2020 Liverpool patient meeting from our Uveal Melanoma community here and here

​Emma Dorris, UCD, Ireland

 

First, do no harm. The MPNE patient information standard
Most patient networks are founded with the desire to provide support and information for patients. However, networks can also allow false information to spread, endangering those very patients the network aimed to protect. What can we as a network do to prevent the spread of incorrect and out-dated information to keep our people safe?
Bettina Ryll

 

 

​10.30- 11.00 Coffee

 

11.00- 12.30

Melanoma Kahoot!! Test your Melanoma knowledge

Session: Network update

Skin cancer apps in comparison
Ciprian Salceanu, tbc

 

The Access Project

Violeta Astratinei

 

MPNE update

Bettina Ryll


12.30- 12.45

Conference summary and closure
Bettina Ryll, MPNE

13.00

Lunch and Departure