Share4Rare Team

Let’s make rare extraordinary! Welcome to Share4Rare

S4R launch poster
We have transformed the 2nd of April into an extraordinary day for people like Ingrid and also for her relatives, friends, doctors and researchers. After a lot of effort and with great enthusiasm we inaugurate Share4Rare today, a social network in which patients with rare diseases can interact and create a meaningful community that helps to share and exchange experiences and to promote research thanks to citizen science. A community that will help transform the rare into extraordinary!

Rare diseases affect less than 5 of every 10,000 people, with 80% being children. Share4Rare is born from the need to connect and join patients with rare diseases from all over the world. Our greatest hope is that together we can create networks that generate knowledge where doctors and researchers will be allowed to open new lines of research and improve the quality of life of children and adult patients.

Share4Rare is also born to fight the isolation of all the families that coexist with these pathologies. In our platform, you will find people in your same situation, open to sharing experiences, advice and feelings so that your family will never feel alone again.


The community of patients and caregivers of Share4Rare, unlike conventional forums, brings together all rare diseases and it is not limited by any topic. It is a safe and accessible meeting place only for previously validated users as patients or caregivers.

Connecting patients with the same disease and symptoms

This big social network uses mathematical algorithms, such as those used by dating platforms, to find affinities among people based on the connection of patients with the same disease and symptoms. Thanks to this compatibility, when a person has doubts about a disease and makes a query, the system performs a search in its database and proposes the most suitable users to answer that question. This helps the mutual support between patients and families, an extremely complex aspect in diseases of very low prevalence and with high heterogeneity of symptoms.

In addition, Share4Rare will promote the donation of clinical data to create knowledge about two groups of diseases: paediatric rare tumours and neuromuscular disorders.

Welcome to our community

If you are an adult patient, relative or caregiver of a paediatric patient, you are welcome to join our community and help us transform this initiative that today start as a valuable experience for all of us. To ask for access, get register through this link.

If you are a reader or represent a patients’ organization, help us spread the project by sharing the images and the promotional video on your website. You can also follow us in social media, mention/tag us and share our contents. The more people receive our message, the closer we will be to helping children like Ingrid. This is our final goal, to help to improve the quality of life of patients and their families. With your help, we can achieve it. Let’s make rare extraordinary!