Leader: Melanoma Patient Network Europe
Share4Rare is going to include two different types of communities, with two different goals: awareness and empowerment.
The first one, the awareness community, is going to facilitate the interactions of patients and relatives at an international level, offering them social media resources, such as wiki spaces, open forums, etc.
The second one, the empowerment communities, are going to promote collective research projects thanks to the close collaboration of patients and families with the scientific team. The rules of this community are going to be based on a win-win approach for all those involved. Educational medical chapters are going to be offered to the families, to increase their knowledge and skills to manage a specific disease. Scientific surveys will also be offered for the donation and collection of valuable medical knowledge on rare diseases. During the collaboration of patients/families with this community, a continuous feedback about the common knowledge collected by the group will be offered.
The main goal of this WP is to define the blueprint of both communities and pilot them with two specific groups of diseases: paediatric rare tumours and neuromuscular diseases.