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!
TOOLKIT FOR PATIENT ADVOCACY
Check out the chapters, use the templates and define your strategy to set a strong base for your advocacy effort. Raise awareness and understanding in your rare disease in terms of communication, research, education, and much more.
No one is alone in Share4Rare. Come in, meet peers, join forces. Make the difference.
Our protagonists
"We see in our community the distress melanoma causes. We need to be able to better support patients and those who care for them"
Gilly Spurrier, founder of Mélanome France
"When my sister was diagnosed with melanoma I looked for treatment options for her. Need really changes how one thinks about what is important"
Violeta Astratinei, founder of Melanom Romania
"Melanoma is a medical and a mental challenge. Better understanding its mental burden will help us to better advocate for what matters to patients"
Bettina Ryll, founder and chair of the MPNE
"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 vast experience and help others"
Sheonad Macfarlane, mother and caregiver
"Share4Rare offers advice and information on specific rare conditions"
Nicky, mother and caregiver
"I am willing to contribute as much as I can to help my daughter and other families so they 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 and still do not have a diagnosis"
Sandra, Edu's mum
"Share4Rare will help us meet other families with similar conditions to that of our daughter and keep up to date with the latest treatments"
Íngrid was diagnosed with LLA when she was 10
"I can also contribute with my practical and emotional experience adquired during all these years living with a daughter with functional diversity
Natalia, Bruna's mum
"I would like that nobody experiences the same feeling of loneliness that we experienced when we receives Pol's diagnosis"
Pol is affected by xeroderma pigmentosum
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