Begonya Nafria Escalera
Begonya Nafria
Share4Rare Coordinator

An international congress to be held in Barcelona will boost research in infantile gliomatosis cerebri

Logo of the III Congress Gliomatosis Cerebri
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Description of the natural history of ultra-rare paediatric tumours

At the present time, infantile gliomatosis cerebri has no cure and children who develop this kind of tumors live no longer than 2 years after being diagnosed. With the aim of enhancing biomedical research on this brain tumor, patient associations organize the third international congress that will bring together experts and families, which will be held in Barcelona.

The III International Congress for Research on Infantile Gliomatosis Cerebri will be held in Barcelona next September 22nd and 23rd, and it is organized by Izás, la princesa guisante (Spain) and co-organized by Frank un rayon de soleil (France), two patients associations.

The objective of this significant meeting, which will bring together families and medical professionals from all over the world, is the mutual exchange, both of research advances and the needs and priorities of the patients. Gliomatosis cerebri  (GC) is a rare pathology that still has no cure and the average life expectancy of these patients is two years. Patients’ organizations advocating for GC patients are an example of the potential underlying close collaboration between researchers, clinicians and families. The first challenge in which they have been collaborating for some time is been the creation of a biobank of biological samples, an essential tool for any basic research initiative aimed at getting to know the disease better and at studying potential therapeutic options.

 

The congress will be divided into two parallel sessions, one focused on professionals and the other on family associations. Professionals will deal with topics such as basic research focused on improving the knowledge on the etiology of the disease: its origin, cause, expansion, etc .; translational research, focused on the development of a better diagnosis and the development of potential treatments; and finally, clinical research, where the challenge is to study innovative treatments that can improve the quality of life of the patients. The Organizing Medical Committee is chaired by Dr. Andrés Morales, director of the service of Paediatric Oncology of Sant Joan de Déu Children’s Hospital in Barcelona.

In addition, this year's event will open a call to request funding for research projects focused on the disease and carried out collaboratively between the different health centers. This fund will be backed by patient associations and will promote the interconnection and transmission of knowledge in order to join forces.

Our project will also be present in the congress and we have prepared a talk targeted to clinicians and another one directed to the families. Gliomatosis cerebri is one of the pathologies included in Share4Rare and it will be piloted with the objective of improving the knowledge about this disease and of gathering valuable data thanks to the information donated by the families. The Share4Rare team has created the first medical guide for families about gliomatosis cerebri, with the aim of empowering families and helping them find answers for patient care. Monica Sarasa, mother of Izás, Kathy Arabia, mother of Anna and Serena Bernacchi, mother of Alexandre, have collaborated in the guide as reviewers of the medical material. Share4Rare works closely with families and patients to ensure that the medical content we offer is adequate, easy to understand and meets their expectations.

The cerebri gliomatosis research community is already active. If you are the father or mother of a patient affected by this disease, sign up for Share4Rare and participate in the community. If you have any questions or need further information, do not hesitate to contact us by sending an email to info@share4rare.org.

Related diseases
Gliomatosis cerebri
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Associations
Oncology
Patient advocacy