MPNEsupport Org 802492-1069, Sweden

Melanoma Patient Network Europe

Last update 5th May 2021 BR

Share4Rare 
Social media platform dedicated to rare diseases, using collective intelligence for the generation of awareness and advanced knowledge on this large group of diseases.

MPNE

is proud to be project partner in Share4Rare, a community that wants to make a difference in rare diseases in children, including cancers.

Melanoma is thankfully very rare in children. But when it occurs, we still want to be able to help parents and children as effectively as possible.

While the treatment of childhood and adult Melanoma usually doesn't differ, provided a country has access schemes for the medicines, cancer in children comes with particular challenges.

We therefore hope that a community of others who also have children with cancer will be of value to those parents with a child with Melanoma and that these communities can drive much-needed research to make a difference. 

​Find out more about the Share4Rare community and join the project HERE!

Pilot projects

We are currently piloting different projects on the Share4Rare platform, one of them in paediatric cancers (all cancers in children are rare!) and are in the last steps of preparing our Burden of Melanoma research project! Interested? Find out more on our dedicated page. 

Objective of the Project

Share4Rare is a collective awareness platform of patients, caregivers, researchers and other stakeholders involved in the Healthcare of Rare Diseases (RD). Based on a socially innovative approach, and building on citizen science and collective intelligence, we will engage and connect all the relevant stakeholders, towards the improvement of the quality of life, the management and the collection of scientific knowledge. The platform will be built around three important pillars: care, education and research. Our Collective Awareness Platform will take advantage of the high-motivated group of citizens (from patients to researchers, from volunteers to public health representatives and health professionals) linked or not to rare diseases, and their expertise. It will build on existing knowledge and initiatives, and will ensure a space for debate and co-creation, and a space for further research. S4R will be based on the shared open data, and on the priorities set collectively. Collective intelligence from patients and families, democratic and transparent participation and a secure environment focused on three layers of interaction will ensure a platform to put in value citizen science that is needed to promote new research initiatives with a patient centred approach.

Read more about the project on CORDIS. 

The project is funded under the EU's H2020 program under Grant agreement ID: 780262

Project Website