A meeting on the Melanoma Patient Pathways facilitated by MELCAYA project partner AMER – The Romanian Melanoma Association
During 22-24 March, 2024, we gathered in Berlin at Charite Comprehensive Cancer Centre for a MELCAYA Patient Pathways workshop organized by Asociatia Melanom Romania (AMER) in collaboration with Melanoma Patient Network Europe (MPNE).
A group of 16 patient advocates, patients, and caregivers from across Europe mapped the challenges in prevention, early diagnosis, and treatment for children and young adults affected by Melanoma and Congenital Melanocytic Nevi. The exercise was conducted by MELCAYA partners Bettina Ryll, founder of MPNE, and Violeta Astratinei, founder of AMER, with valuable contributions in design thinking and methodology from our MPNE colleague Andrew Evans.
Building CAYA Melanoma Patient Journey Maps and group debate
Participants from European and national patient advocacy groups, including MPNEurope, Melanom Romania, Dutch Melanoma Foundation-Stichting Melanoom, Nevus Network Germany, Nevus Network Netherlands, Nevus Network Denmark, Melanoma Sweden-Melanomföreningen, Melanoma Spain, and Sarcoma and Melanoma Poland-Stowarzyszenie Pomocy Chorym na Mięsaki i Czerniaki documented and addressed difficulties along the Melanoma Patient Pathway in several European countries.
Example of Melanoma Patient Journey Map, by AYA patients and patients advocates from Netherlands and Romania
Our workshop included a 2-hour Focus Session on prevention and early diagnosis policies organized by MELCAYA colleagues Laura Sampietro, Head of the Innovation Assessment Unit at Hospital Clinic Barcelona, researchers Paula Closa Granados and Costanza Raimondi, and Prof. Pietro Refolo from Università Cattolica del Sacro Cuore, Rome.
Focus Session- Identifying challenges in Melanoma Prevention and Early Diagnosis and gaps within current melanoma policies for children, adolescents and young adults (CAYA)
We followed the session with a presentation by Prof. Dr. Thomas Eigentler and discussions with Prof. Max Schlaak from the Dermatology Clinic and Research Unit on the outcomes of prevention campaigns and clinical developments at the Clinical Research Unit from Charite. The meeting was completed with a visit to the Illumina Solution Center, where participants benefited from a deep dive into NGS technologies, germline mutations, and precision oncology.
Visit of melanoma patient advocates to Illumina Solution Center, Berlin
We are grateful to the Comprehensive Cancer Centrum Charité Berlin, our partners in MELCAYA for hosting our meeting. We extend our thanks to everyone who contributed, especially the parents whose loss reminds us that RARE should never be an excuse for the poor management of children suffering from melanoma. We need better ways to protect children and young people suffering from melanoma and will continue our collaborative efforts within MELCAYA to achieve this!
This workshop is part of AMER’s tasks within Work Package 7, Health care system strategies implementation to inform policy and ethical dimension.
The workshop Program is available here: https://www.mpneurope.org/melcaya-at-mpne
