Goals

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What do we do?

Our goals

The Association pursues objectives of social and socio-health solidarity for those cancer patients with Desmoid Tumor and Gardner’s Syndrome, our goal is to offer them support to respond to those problems regarding the diagnostic, the medical treatment, health and therapeutic assistance.
The Desmoid Foundation aims to spread correct information to patients and their families according to the disease and its problems, the impact and consequences of it on patient’s life.
As we know in case of common pathologies the availability and reliability of medical and scientific information is given for certain but the same thing doesn’t happen in case of rare diseases or tumors. In fact in this latter case the information – which are often given by non – specialized doctors – are difficult to find, as well as confused, partial and contradictory and this may cause serious consequences for the patient and his health.
The worst enemy of this disease is the lack of competence in the field: the lack of medical-scientific knowledge of the behavior of this locally aggressive, non-metastatic, highly aggressive tumor. Even today, too often, patients are not aware of how dangerous is to go to NON-specialized centers and of how devastating could be the non-reversible effects caused by the negligence of incompetent doctors.

THE DESMOID FOUNDATION WORKS ON TWO FRONTS

WE SUPPORT PATIENTS

✓ In order to spread the treatment guidelines, that is the international protocols drawn up annually by the group of the most important Specialists in the world of this pathology.

✓To provide information relating to treatment centers, existing therapies and Italian and foreign specialists competent in this field.

✓ To break the sense of isolation, confusion and disorientation of those who have just received a new diagnosis and to provide their support in case of need.

✓ To manage a patient registry so as to offer useful data for scientific research.

WE SUPPORT THE MEDICAL COMMUNITY

✓  In order to spread the culture of responsibility, so that surgeons, oncologists, doctors in general, who do not know Desmoid Tumor, with conscience and humility could refer patients to the few specialized centers in Italy.

✓  To support, guide, influence the choices of pharmaceutical companies, the Medicines Agency and the National Health System for the approval, entry into Italy and the production of new drugs, as well as to push these players to understand how fundamental is to invest in clinical trials for this pathology and for all other diseases, malignancies or syndromes too.

✓  To have a larger database at both national and international level, aimed at starting collaborations on studies or scientific studies.

THE DESMOID FOUNDATION PROMOTES

PROJECTS

PROJECTS

 We are the creators and promoters of Projects aimed at disseminating structured information addressed to family, doctors and health professionals, with regard to the diagnosis, therapeutic opportunities and treatments currently existing for Desmoid Cancer.
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EVENTS

EVENTS

 We participate in national and international events with the aim of spreading awareness of Desmoid Tumor, to compare ourselves with other Associations and Doctors, so as to support patients and promote the existence of the Association as a reference point.
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INITIATIVES

INITIATIVES

We support, sponsor and organize initiatives in partnership with “Friend Associations”. Our goal is to create an active Community, capable of both offering help and support to Patients and stimulating the search for new treatments.
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What other activities does our Association carry out?

✓  It gathers the largest number of people with Desmoid Tumor and Gardner’s Syndrome on the national territory, creating a network of patients, thus promoting comparison and dialogue.

✓  It carries out awareness activities on pathology through meetings, events, the use of telematic and social tools. The awareness-raising activity aims tostimulate a more widespread knowledge and awareness of the pathology to help improve the patient’s diagnostic, therapeutic and life path.

✓  It promotes partnership, exchange and collaboration relationships with and between the Companies of the Scientific, Medical and Pharmaceutical world that deal with Desmoid and Gardner’s syndrome. The goal is to encourage the scientific research and the dissemination of new knowledge between doctors and health professionals.

✓  Promotes and highlights scientific research initiatives and clinical trials

✓  It contributes to the diffusion of videos, scientific studies and researches, papers, articles, bibliographies concerning the pathology and the problems deriving from it.

✓  It cultivates relationships with national and international Associations concerning this pathology and, more generally, relationships with organizations having purposes and programs similar to its own.