The MELCAYA special session at MPNE2023
After a break due to COVID, we proudly announce that MPNE2023 was held in Brussels, between 28-30th April, reuniting more than 100 attendees, patients, family members and patient advocates from 24 countries within and outside the European Union, including the leaders of national melanoma groups.
We continued the tradition of discussing the latest developments in research and policy affecting us, with a more prominent focus this year, on concrete projects that solve our issues in Melanoma.
One of the conference’s highlights was the session dedicated to Melanoma in Children, Adolescents and Young Adults and the MELCAYA project, organized on the first day of the MPNE conference, Friday, 28th April. We had the pleasure to have amongst us our consortium colleagues, Suzana Puig from the University of Barcelona, Daniela Massi from the University of Florence, Laura Sampietro-Colom and her team from Clinic Barcelona University Hospital, Constanza Raimondi from UNICAT Italy and Marjolein van Kessel, Board Member of Nevus Netwerk Nederland (NNN).
The session raised high interest and was attended by over 90 patients, family members and patient advocacy group leaders or members of national patient organizations, representing 24 countries from within and outside the European Union, Patients advocates could become an important link with CAYA melanoma patients in their own countries, able to transfer knowledge and support patients in their national languages. The majority of those present were affected by cutaneous Melanoma, with 78% in advanced stages, but we also had those impacted by ocular, acral, mucosal and paediatric Melanomas,
The session was introduced by Bettina Ryll from MPNE and Violeta Astratinei, MPNE and AMeR, as the partner of MELCAYA. It was shown that Melanoma in children and young patients is hard to diagnose, still lacks treatment options, and their outcomes too often depend on where the patients live.
Geographical inequalities seen in adult melanoma are exacerbated in the case of pediatric melanoma because of its rarity. Melanom Romania (AMeR) recently joined the MELCAYA EU project as a project partner to address some of these issues in a more structured way.
MELCAYA was seen as a very attractive project that builds knowledge on genetic and environmental triggers, melanoma genesis, how to ensure accurate diagnoses, non-invasive early detection tools and innovative therapies, and most importantly, how all these elements could reach patients living in different EU countries. Suzana Puig presented the activities of the project and the anticipated outcomes.
Daniela Massi discussed challenges in melanoma diagnosis and a proposal for a second opinion platform, while Laura Sampietro- Colom described their work on the guidance for Health Authorities to support decision-making on early diagnostics and prevention of melanoma in children.
The presenters highlighted the opportunity for patients, family members and patient advocates to contribute to research and its implementation. Patient advocates showed high interest, with most of the comments supporting direct patient benefit, while researchers focused on project needs. The Q/A session was dominated by discussions on access in Eastern European countries by advocates from Latvia, Romania and Poland. In contrast, advocates from Western European countries (Denmark, Germany, Netherlands) saw education and capacity-building opportunities.
The special session on Friday was complemented by an exciting science debate on Saturday, 29th April, where developmental biologist Heather Etchevers from Aix-Marseille University and the lead of WP2 in Melcaya, partnered with Des Dobin from UCD Charles Institute of Dermatology, Dublin in explaining the biology of melanocytes and their transition to melanoma.
The MELCAYA session at MPNE2023 is the first of the eight interactions (two times per year) scheduled between researchers and the wider EU melanoma community within Work Package 9: Patient Engagement, Education and Advocacy, lead by the Asociatia Melanom Romania (AMeR) with the support of MPNE.
Short statements, collected after the session and videos are in preparation. The program of the MELCAYA session within the entire MPNE2023 conference can be consulted here https://www.mpneurope.org/program-mpne2023
MPNE – We are European Melanoma patients, carers and patient advocates. We want to see as many Melanoma patients survive as possible. We have therefore built a system of networks that allows us to bridge language barriers and share Melanoma knowledge reliably and fast across large geographies. We work according to local priorities but shared working principles- our MPNE principles.
AMeR is a national melanoma patient organization from Romania affiliated to MPNE. We want to improve the life of melanoma patients, and as a partner in the MELCAYA project, we facilitate Patient Engagement and interaction with the EU melanoma community.