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Italy: Italian Desmoid Foundation

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Contact Information

Italian Desmoid Foundation (Associazione Italiana Tumore Desmoide)
Via Giacinto Bruzzesi n°5
20146/ Milano (MI)
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Contact Person

Giulia Personeni, Vice President
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Elisa Baldoin, International representative
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Organisation Profile

The Associazione Italiana Tumore Desmoide is the first Desmoid Foundation in Italy (ONLUS).

It was founded in November 2018 through a chance encounter between Enrica Rossi and Giulia Personeni (both Desmoid patients) in alliance with the medical equipe of Dr. A. Gronchi A. and Dr. P.Casali of the Istituto Nazionale per lo Studio e la Cura dei Tumori based in Milano, that since many years are studying this pathology on international level.

So after many discussions and exchanges of idea and dreams how to create this Association, (cause actually the Desmoid is still underestimate and not so considered), and thanks to the big help and collaboration of many others patients, they had decided to create this group providing diagnostic / therapy guideline, and psycologhic support.

Mission

The Associazione Italiana Tumore Desmoide seeks to advance the science related to Desmoide tumors, our main objectives are:

  • Build a strong relantioship and collaboration with the Istituto Nazionale per lo Studio e la Cura dei Tumori based in Milano
  • Training to create the Patient Advocate’s figure
  • Promote the guideline to approach properly the diagnosis and the correct treatment of the Desmoide in an effective and comprehensive way through the Association and the Istituto Nazionale per lo Studio e la Cura dei Tumori based in Milano.
  • To provide support and the right direction about the pain treatment which is one of the major problem of Desmoide.
  • Provide a psychological support to patients through an online support by social network, phone call or by one-o-one (respecting the privacy of each patient or family member giving the chance to choose which way is better for them)
  • Funding research related to the diagnosis and treatment of Desmoide tumors at the international level creating a specialized Team of Oncologist, pain therapists, radiologists and pathologists who refer to a network of hospitals all located in Italy

Our goal is to allow the Desmoide be more curable through comprehensive, readily accessible treatment and support services educating and informing patients/families and the health professional community bringing together the energy, ideas, skills and resources from researchers, clinicians and community.

We are a group of enthusiastic and strong patients, and together with the big help from the Istituto Nazionale per lo Studio e la Cura dei Tumori based in Milano we are sure that many people affected by Desmoid finally can find a clear and precis way to act and get a better life.