We at the Desmoid Foundation strongly believe in the value of Participation

The Association promotes initiatives, events and projects

Up to now, the DESMOID FOUNDATION has actively participated in many scientific events: meetings and conferences aimed at updating knowledge on the pathology, in relation to the latest research studies and clinical trials, both as a Guest and as Speaker. He has also participated in Initiatives and Meetings with other Associations of patients with Desmoid Cancer both at European and world level, in which he had the opportunity to speak, relate and exchange information as well as share projects. By creating an international work and exchange group that is constantly updated on the latest news, conferences and trials regarding this rare pathology.

It actively and constantly participates in Training Activities o grow and educate its members in the role of PATIENT ADVOCATE: a new figure that aims to protect the rights of its patients as well as maintain relations with the scientific community and disseminate information on the disease, increasing its visibility in the eyes of Research, pharmaceutical companies and the National Health System. These events were also an opportunity to get to know and create networks with many other National and International Voluntary Associations of RARE Cancers, promoting our work and active collaboration, joining forces for the pursuit of a common cause: PROTECTING THE RIGHTS OF PATIENTS WITH RARE CANCERS.

In addition, the Association is particularly concerned with MEETINGS BETWEEN PATIENTS, which represent an opportunity for exchange and mutual help. For this reason, in March 2019, just four months after his birth, he organized the FIRST gathering of patients suffering from Desmoid Tumor in Rome, which was attended by more than200 people from all over Italy: a great goal and opportunity for people sick with a tumor so rare that in their entire path they had never had the opportunity to know someone else with their pathology!

For these and many other initiatives WE ALSO NEED YOUR HELP!


Do you want to become a VOLUNTEER of the Desmoid Foundation?

WE are waiting for you … visit the SUPPORT US section and you will find all the information to be part of this great family!

Patient event
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Training activity