UM patients are involved with UM CURE 2020 from the start, more specifically through networking activities led by full consortium partner Melanoma Patient Network Europe (MPNE). Patients will be further informed through the project on the occasion of meetings organised at the four reference centres. Besides the need to better inform the patients on their disease and involve them, strong rare disease patient communities have been proven to be powerful drivers of clinical research and to be able to recruit clinical trials in a very short amount of time. Developing a successful treatment requires tight integration of the different phases from pre-clinical research, clinical development and true access for patients requiring effective collaboration along the entire stakeholder spectrum.
UM Cure 2020 aims for increased knowledge exchange and potential for discussion between clinicians and patients, between scientists and patients, and between patients themselves as a result of supporting patient network groups, use of the website and communication tools and organization of symposia. The benefits of a European UM patient network are manifold but include a bringing together of the patient and scientist/clinicians’ worlds, with a better respective understanding of the problems and main concerns encountered in both.
Increased awareness of UM that will be attained through the growth of a UM patient network, the UM Cure 2020 website and its dissemination actions should have a positive effect in wider and better diagnosing of both the primary and metastatic disease earlier, through education of those clinicians not so familiar with UM, and increase patient partcipation in the future clinical trials.
We will design a brochure toward UM patients which will be available here and include crucial information about the disease, the expert centres, ongoing clinical trials, and possibilities of treatment. The brochure should be distributed through physician and patient networks and availbale in several European languages.
We encourage patients and their families to get involved and find further support through dedicated patient networks and resources.