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Share4Rare Project Manager

The research project for paediatric gliomatosis cerebri is already here!

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Gliomatosis cerebri is an ultra-rare disease that can sometimes affect children. In Share4Rare we foster research on this pathology in order to get to know its natural history better and to support further projects on this condition. This has been made possible thanks to the collaboration of the different patients' associations at a global level.

Some time ago we met Mónica, Izas's mum and president of the Spanish association of gliomatosis cerebri "Izas, la princesa guisante". Her story is an example of courage, struggle and dedication. This patients' organization was created to promote research in this pathology, something highly necessary given the absence of any therapeutic option. Today the average life expectancy of children affected by gliomatosis cerebri does not exceed two years.

Some time later we met Kathy, Anna's mother and president of AYJ fund, in the USA. We then realized that when families join together, they gain a particular strength that helps getting things moved. Kathy, Monica and other families affected by gliomatosis cerebri joined together to create GC Global an international community of families and foundations who have come together to encourage and promote international congresses in gliomatosis cerebri. These events include meetings with doctors and professionals involved in the diagnosis, care and treatment of gliomatosis cerebri, as well as parallel sessions with family members and patients' associations. The aim of theseconresses is to grow and change the life of children affected by gliomatosis.

Now all these families have joined Share4Rare and along with the doctors of Hospital Sant Joan de Déu in Barcelona have created the first research community based on clinical data on our platform. Patients and doctors have co-created the questionnaires to collect information on cases that will be ultimately analyzed by professionals. These results will be shared with the users who participate in the study and will give doctors and researchers a basis for identifying patterns, knowing the disease better and creating new experimental hypotheses that will lead to a better diagnosis and potential treatments in the future.

For all the above, we invite you to join our collaborative project. If you know anybody affected by gliomatosis cerebri and you would like to help boost research, you may participate in the webinar that we will conduct about this pathology and project on Saturday, November 16th at 5:00 p.m. (CET). The webinar will be in English. During the session we will explain:

  • What is Share4Rare
  • How does Share4Rare work
  • How to participate in the gliomatosis cerebri research project
  • How to get involved as a Share4Rare ambassador

Remember that together we are stronger. Sign up to the webinar here!

Related diseases
Gliomatosis cerebri
Patient advocacy