This collective online platform can make a difference for rare disease patients and their families.
Rare diseases amount to around 8,000 different conditions. They affect approximately 30 million people in Europe alone – and 80 per cent are children. Surprisingly, only about 10 per cent of these diseases have a solid scientific knowledge base.
To deepen the knowledge of the remaining 90 per cent, the Barcelona-based Sant Joan de Déu Research Foundation has launched Share4Rare, the first social media network to connect patients, caregivers and researchers of rare diseases around the globe; offering a virtual and safe meeting place to families affected by rare diseases and collecting relevant information to advance in the research of these conditions.
Unlike conventional forums, the Share4Rare project incorporates citizen science with mathematical algorithms, such as those used by dating platforms. These help to connect users based on the information they provide in their profile and make it possible for people to direct their queries to those who are most likely to be able to provide an answer.
Share4Rare also helps patients and carers affected by the same disease or symptoms to connect so they can support each other. This is extremely important in the rare disease community where conditions have a very low prevalence and a high heterogeneity of symptoms.
The Share4Rare platform was publicly released in April 2019 under the slogan “Let’s make rare extraordinary”. In addition to connecting families who may be living in isolation with a rare disease, Share4Rare aims to empower them to manage their condition by providing access to educational materials written by medical experts in their field. Share4Rare also collects clinical data from users of the platform, which will form a basis for research. In the first phase, the platform collects data for two large sets of diseases: paediatric tumours and neuromuscular diseases.
Experts from the Sant Joan de Déu Research Foundation lead the project funded by the European Commission under the Horizon 2020 program. The World Duchenne Organization, the Melanoma Europe Patients Network, the universities of Newcastle and Politècnica de Catalunya, and companies in the social sphere, such as Asserta and The Synergist, are also part of the project consortium.
AtlasAction: Share this article to help Share4Rare reach patients with rare diseases all around the world.
Journalist and blogger, he has worked as an editor for several travel, nature and science magazines for the last 20 years.
Sant Joan de Déu Research Foundation
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