The Desmoid Foundation

The Italian association Desmoid Foundation is a no profit organization arose the 15th of November 2018 thanks the initiative of two young patients aware of the importance to create an association to support people with this rare disease.


During the process it was significant even the support of the scientific community of the Istituto Nazionale dei Tumori of Milan, and in particular the help of the Professor Casali, and of Doctor Gronchi and the respective equipe. They have both collaborated with us since the beginning, showing us their support.

So this ONLUS represents the perfect example off collaboration between Patients and Doctors: without this mutual help the Desmoid Foundation would not be here.

Our Goal

What we do?

Rise awareness
Our goal is to spread awareness among the scientific community and patients in order to direct them to the specialized medical centre.
To inform
We inform patients about the medical centers, the medical therapies, the clinical trial and the Italian and foreign specialists.
To support
We want to show support to those people afraid of having received the diagnosis of desmoid tumor.
To influence
We want to influence the Medical and Pharmaceutical stakeholder’s choices so that they can give new stimulus to the Scientific Research.
Who work in the Desmoid Foundation

Board Of Directors


Enrica Rossi

She is the President and the creator of the Desmoid Foundation.
She works in the business and university fields in the Organization, Corporate Training and Business Coaching sector.
In addition to those representation activities, she performs mainly management, public relations tasks in the medical and association fields. She deals with the conception, writing and start-up of new projects, driving the Association.
They say about me: “outgoing, solar, passionate, daring, determined … sometimes a little too instinctive!”

Vice President

Giulia Personeni

She is the Vice President and the creator of the Desmoid Foundation. She is a pre-med student working hard for creating a strong relationship between the Association and the Scientific community.

She constantly studies and updates about all those news in terms of medical treatments, the evolution of the research and the launch or progress of the clinical trials. She is the link between the scientific community and patients helping them to understand the medical data provided by the Medical team.

They say about me: “balanced, tenacious, strong, courageous, tirelessly focused on the goal … sometimes a little too harsh”


Marianna Coppola

She is the secretary of the Desmoid Foundation since 2019. She has a degree in biology and she is specialized in molecular diagnostics and nutrition, she is the operational and multitasking soul of the Association.
Nerd by vocation, he is a strong point of reference for the Association, in all ordinary and operational activities. She also takes care of the management of all our multimedia and social channels: Linkedin, YouTube, Facebook, Twitter, Instagram.
They say about me: “Scheduled for rules and deadlines, determined, reliable, precise … sometimes a little introverted”

IT Manager

Simona Fiocco

He sits on the board of directors from 2021 and holds the role of Information Technology Services Manager in the Association. Brilliant, exuberant, it is an unstoppable “powerhouse”. Determined and stubborn, for her determined and resolute personality she represents a solid point of reference both in difficulties and in everyday activities. And then .. it has a streak of healthy madness that makes it colorful!
They say about me: “She is reliable, serious, professional … and then she is crazy. Completely.”

Head of the relation with the Sisters Organizations

Marilena Ferreri

Marilena manages the relations with the International partner organizations. She also takes care of all the organizational aspects of the events and manages the behind the scenes of activities and projects promoted by the Association.

She is punctual and highly organized, driven by the search for new ideas and inspirations, she has a great spirit of initiative.



Head Of The Desmoid Foundation Young

Stella Tornabene

Stella is the head of the “Young” section, or the area that deals with the support of pediatric and adolescent patients. She has a great desire to cultivate and expand the network of young patients internationally because according to her “our community has no geographical boundaries”.

TStubborn, generous, with a great desire to do, to confront young people like her

Creative gift thinker

Carlotta Del Vecchio

She is a nurse with an important experience. She is the creator of the group: she helps the Association in organizing events, in the design and creation of gadgets and small thanksgiving gifts for our supporters!

Among the most competent patients on pathology, she has been fighting for years with stubbornness, positivity and determination.

Interpreter and Translator

Sabrina Mercuri

Sabrina takes care of all the translations of the Association’s texts and projects: a fundamental role as the Desmoid Foundation continuously interacts with foreign organizations and medical professionals from all over the world.

In this way, she drives the Association to an international level: where our non-profit organization has already obtained acknowledgments and prizes from experts in the sector.

Sweet and brave, she is not afraid to throw herself into new projects and challenges.She has several university degrees!

Our Collaboration With The National And International Organizations

Partner Organizations