How does it work?
Share!
Share your diseases and your symptoms to help us find people who are just like you for you to connect!
Participate!
Contribute to research by donating medical information about your disease.
Diseases
Share4Rare is going to be piloted with three groups of conditions: rare tumours, neuromuscular disorders and undiagnosed. Besides, we publish quality medical content for these conditions and more, and other diseases are constantly being added to our activities.
Check back from time to time!
No one is alone in Share4Rare. Come in, meet peers, join forces. Make the difference.
Our protagonists
"The only way to know how COVID-19 impacts patients with rare diseases is international collaboration as proposed by this project. This way we can
Dr. Guillermo Chantada
"The pandemic caused by SARS-CoV-2 exposes patients with rare diseases to an unprecedented situation that must be analysed."
Dr. Marcelo Andrade
Our children, although with different genes and conditions, share common symptoms and treatments; we can share our wealth of experience with others.
Sheonad Macfarlane
Share4Rare offers advice and information on specific rare conditions.
Nicky
I would like that those people do not have to experience the same feeling of loneliness that we experienced when we receive Pol's diagnosis.
Pol
I am willing to contribute as much as I can to help my daughter and so that other families do not feel as bad and lost as I feel.
Litza, Mia Regina's mum
This project is very important for the people of our association and for all those people who are like Edu, those who still do not have a diagnosis.
Edu
Share4Rare will help us meet other families living similar conditions to that of our daughter and keep up to date with the latest treatment advances.
Íngrid
I can also contribute with my practical and emotional experience during all these years of living with the reality of a daughter with functional
Natalia, Bruna's mum
Share4Rare is a patient centered platform focused in the research that matters to patients.
Begonya Nafria
Research is the only way to get around the limits.
Jaume Mora
We investigate to deliver effective tratments and the only way forward is to work in parthership with patients and families at all stages of research
Cecilia Jiménez