2023
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
2021
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
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.
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.
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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.
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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