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2023

MPNE annual 

MPNE 2023

28th- 30th April 2023, Brussels, Belgium 

Back after COVID! Standing at the Edge.

MPNE annual 

PCM4EU @MPNE 2023

27th- 28th April 2023, Brussels, Belgium 

PCM4EU is a precision medicine implementation project funded under the EU4Health program. At the centre of PCM4EU are a group of national clinical trials built after the original Dutch DRUP trial, therefore referred to as DRUP- Like Clinical Trials, or DLCTs for short.

This workshop is a pilot for finding more effective collaborative partnerships with the European Cancer Patient Advocacy Community.

2022

MPNE mini

MPNEminiMeet 2022

18th- 20th November 2022, Brussels, Belgium 

Over the Edge. A new meeting format- smaller and focused on horizon-scanning.

MPNE bootcamp

Bootcamp22

13th- 15th May 2022, Champalimaud Foundation, Lisbon, Portugal

Part 2: Research remains a priority for us in Melanoma. How can we get more strategic, better research faster? 

MPNE bootcamp

Bootcamp21 f2f

11th- 13th February 2022, Berlin, Germany

Part 1: Research remains a priority for us in Melanoma. How can we get more strategic, better research faster? 

2021

MPNE bootcamp

Bootcamp21 virtual

Friday, 3rd December and Saturday, 4th December, 2021 virtual

virtual: Research remains a priority for us in Melanoma. How can we get more strategic, better research faster? 

2020

MPNE

Krusenberg 2020-virtual
NGS bootcamp

An introduction to Next Generation Sequencing and Advanced Molecular Diagnostics for patient advocates

MPNE

First MPNE
consensus meeting

Marivaux Hotel, Bd Adolphe Max 98, 1000 Bruxelles
13th- 15th March 2020

ESSENTIAL REQUIREMENTS FOR  

UVEAL MELANOMA GUIDELINES

2019

MPNEhubs 

Effective advocacy

22nd- 24th November 2019, Krusenberg

Impact through Evidence and Know-How

MPNErare

MPNE rare 2019

25th- 27th October 2019, Berlin, Germany

The challenge of being rare.

MPNEnordics

MPNE nordics 2019

11th- 13th October 2019, Gothenberg, Sweden

Melanoma in the North of Europe. Our first MPNE nordics conference! 

MPNCEE

MPNCEEhubs 2019

30th August- 1st September 2019, Skopje, North Macedonia

Melanoma in Central and Eastern Europe. 

Looking for opportunity.

QuickStart

EADO quickstart 2019

24th- 27th April 2019, Paris, France

QuickStart Learn and Share- a starter workshop for Melanoma advocates.

MPNE annual 

MPNE 2019

22nd- 24th March 2019, Brussels, Belgium 

At the Edge. Access, Research and Perspective. 

2018

2017

Krusenberg 2017

Lean Advocacy
with Andrew Evans and Otto Freijser

24th- 26th November 2017
Krusenberg, Sweden

Build. Measure. Learn. Repeat 

Join us for a workshop to find out what Melanoma advocates can learn from the way Start-up companies think and work.

And test it directly on the Melanoma issue closest to your heart!

2016

2015

MPNE

MPNE 2015
The risk of not taking risks in Melanoma.

24TH- 26TH APRIL 2015​

HOTEL MARIVAUX BRUSSELS
Boulevard Adolphe Max 98
1000 Brussels - Belgium

With a chance to live in sight but still out of sure reach, patients need early access to innovative therapies combined with systematic learning.  

A critical factor in both is the understanding of which risk is acceptable and which benefits are desirable and how risks and benefits are weighed against each other. While patients carry the ultimate risk- both if therapies fail but also if they cannot access potentially life-saving therapies- risk/ benefit decisions are routinely made by non-patients. 

 

The aim of this conference is therefore to take a closer look at risk from a Melanoma patient's perspective, in particular in the context of new therapies. Which type of risk are Melanoma patients willing to accept for which type of benefit? 

As with any other stakeholder group, patient opinion cannot be expected to be a single value, but rather a continuum of opinions. In a workshop (Friday) with representatives from the EMA, we will therefore look into how this diversity of opinions can be accurately captured in Stage IV Melanoma. 

​​We will then see how other stakeholders evaluate the risk of innovative therapies to arrive at comprehensive understanding of risks associated with innovative therapies.

While today's Melanoma patients might be willing to accept a higher risk in return for earlier and wider access to promising therapies, this will require systematic gathering of data, both to mitigate risks- early problems need to be picked up and reacted upon promptly- and for a systematic learning process towards a cure. To see whether the use of Real World Data could be a way forward, we will be having a Focus group (Friday) and a Podium Discussion (Saturday) as part of the GetReal project.

 

And as we are the Melanoma Patient Network Europe, there will be plenty of opportunities to meet other European Melanoma patients and advocates, to catch up in real life with friends and to make new ones! 

In our interactive Friday workshops, you will learn more about Melanoma, what a good Mole check should look like and which type of psycho-social support would make all the the difference for our patients. Aim will not only be to acquire knowledge but also to summarise it in a format to share with our wider network afterwards, so you will get the opportunity to contribute to knowledge that matters for our community.

On Sunday, we will discuss what has happened since our last conference and the advocacy actions we will take forward in 2015/16.

2014

MPNE

MPNE 2014-               
run as joint m-icab/MPNE-  ESO meeting
PATIENT PARTICIPATION IN MELANOMA CLINICAL RESEARCH

28TH- 30TH MARCH 2014  
BRUSSELS, BELGIUM

Recent unprecedented progress in melanoma therapies provide for the first time hope for patients in advanced stages of the disease. However, navigating a fast-evolving treatment landscape presents a real challenge, not only for patients but also their advocates.
With novel treatments in development, the most promising agents are often only accessible in a clinical trial setting. For this reason, access to and participation in clinical studies strongly shape the reality for stage 4 and increasingly, also stage 3 melanoma patients.

The current logistical, ethical and humane challenges to melanoma patients’ enrolment in clinical trials now appeal for a change of paradigm in the design and conduct of these trials. 

 

 

The topic of this conference is therefore patient-centred clinical trial design in Melanoma and the different stakeholders (patients, clinicians, regulators, HTA and industry) will contribute their perspectives to whether alternative licensing models- such as adaptive licensing- are better suited to address the needs of Melanoma patients. 

 

The focus of the second day of the conference is Melanoma patient advocacy in Europe and how we as advocates can make use of the newly founded Melanoma Patient Network Europe to exchange know-how and collaborate effectively on European issues in Melanoma.

There will be plenty of opportunity for patient advocates to meet, including a poster session for advocacy organisations to present themselves and their most successful advocacy projects!

We are looking forward to meeting you in Brussels!

 

Bettina Ryll, Conference Chair

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