On Tuesday, 22nd October 2013, ECPC participated in the First Melanoma MIB Conference organised by Alessandro Testori in Rome which marked a historic moment in cancer advocacy and in particular ECPC’s support for melanoma patients. Stakeholders and members of the melanoma community gathered to identify and adopt concrete actions to improve the situation for melanoma patients. Participants in the interactive conference included representatives from pharmaceutical companies, academic researchers, practising clinicians, as well as patients and patient advocates.
Francesco De Lorenzo, ECPC President, explained the purpose of the ECPC Independent Community Advisory Board structure and future plans. Please see below the link to his powerpoint presentation:
Presentation Francesco de Lorenzo
De Lorenzo recalled the work done by patient advocates such as Prof. Patricia Garcia Prierto and Quentin Van Daele that led to the foundation of the Melanoma Independent Community Advisory Board through ECPC. This included the organization of three annual European Conferences from 2010 to 2012 and the publication of the Melanoma White Paper titled ‘Reshaping EU Healthcare for Melanoma Patients’ that is being translated into different EU languages. Please check the document below:
White Paper on Melanoma – Reshaping EU Healthcare for Melanoma Patients
De Lorenzo highlighted that ECPC is committed to revitalizing the MICAB platform and updating the White Paper with all stakeholders. The concluding recommendations proposed by De Lorenzo are as follows:
- Realize Cross Border Health Care for the Patient. Action: Need to identify a network of expert centers in association with the national contact points so as to facilitate patients access to better treatments;
- Access to more clinical trials in the EU; Action I: Allow patients to get more information about clinical trials and the availability of clinical trials; Collaboration with major centers of research and care for melanoma. Action II: ECPC to create a data-base of clinical trials in the EU;
- Utilize patient organisation to share knowledge and awareness throughout the EU. Action: ECPC is collaborating with all MICAB stakeholders to provide information which can be disseminated to all patients and citizens
- Identify ‘best practice’ at the national level that can be replicated across the EU such as legal changes that allow early access to innovative treatments.