Do you know the Share4Rare platform? This is a unique initiative that has
arisen this year to raise awareness about rare diseases in a professionally
rigorous and narrow way from a patient’s point of view. This project is
part of Barcelona’s Sant Joan de Déu Hospital, funded by the European
Commission, to promote research on rare diseases, linking specialists,
health professionals and families. The SIOP Europe team of Gliomatosis
Cerebri is supporting the project, and this will be an opportunity to learn
more about the disease.
This network will be presented by its creators as part of the program of
our III International Congress for the Research of Gliomatosis Cerebri,
since this disease is one of the minority pathologies with which this
platform was launched, although gradually moreand more pathologies will
also their place.
Thanks to the great experience of this health center in research on rare
diseases, the organisers are aware of the fact that progress is much more
effective whenever patients, families and professionals collaborate,
exchange information and interact from the beginning. As the creators of
this social network explained, their intention is to connect rare disease
patients around the world, to create knowledge-generating networks that
promote research among professionals, to fight against the isolation of
families, and improve the quality of life of patients.
The objectives of Share4Rare:
- Educate: creation of quality and proven material by clinical teams on diseases rares included in the pilot project (rare neuromuscular diseases and pediatric tumors such as gliomatosis cerebri).
- Sharing: patients with rare diseases are often spread around the world, in different health centers and without the possibility of communication because of geographical and linguistic barriers. Its mathematical algorithms will thus create a network of relationships based on the illness and symptoms of each patient and the automatic translation will allow communication between people. This is reflected in the community with Q & A tool as well as private messaging.
- Research: The clinical teams of the hospitals that make up the project
will create questionnaires to collect clinical data from patients. Users
will be able to access it, fill it in, and a team of researchers will
analyze the data and send the general results to patients.
Rare diseases are conditions that have fewer than five cases per 10,000 population and affect children in up to 80% of cases. There are more than 7,000 different pathologies affecting about 30 million people in Europe alone, but unluckily we have a solid scientific knowledge base only on 10% of these diseases. With the motto “Let’s transform the rare into extraordinary”, the Share4Rare platform aims to facilitate the research for these diseases and empower families, offering them quality information prepared by experts in each pathology.