For some years, the idea was already in the works to create a coordination network between all the Associations of patients suffering from a rare disease and their families who are based in Piedmont and Valle D'Aosta. Since the beginning of 2016 the site has come to life, it has been animated, and today A-RARE, the Forum of Associations of Rare Diseases in Piedmont and Valle d'Aosta, was finally born.
In recent months, various planning meetings have taken place between the representatives of the 28 Associations that have joined the Forum so far, a planning document has been drawn up containing the mission and objectives of the project, together with a first list of needs expressed by the associations that will come discussed and presented to the competent institutions.
Precisely: one of the main objectives of the Forum is precisely to unite the voices of individuals, patients and associations, to create a "choir" that, in a coordinated manner, can make patients' needs be felt by those who have a duty to listen. An institutional duty, given that many needs inherent the rights of sick people. Only in Piedmont live about 30,000 people who suffer from an "orphan" disease, even if only one is needed to claim their rights.
The work to be done is still arduous and difficult and the path that will lead to achieving the objectives of the Forum is long. But it is a path that will include small steps and small achievements, and given the team spirit that is experienced during each meeting, one can hope that in the future the first results will not be long in coming.
The Forum was established in close connection with the Technical Table for Rare Diseases of the Piedmont Region, where two representatives of Patient Associations are present, with the Coordination Center for Rare Diseases (CMID), with which numerous positive comparisons have taken place and with the Federation of Infant Rare Diseases, of which many of the associations that have promoted its creation are part.
A-RARE will be officially presented on February 28th 2017, from 10 am to 1 pm, in the Aula Magna of the Giovanni Bosco Hospital in Turin, in the context of a meeting organized on the occasion of the international day of rare diseases by the CMID and the Forum A- RARE. The program of the meeting and various information will be published shortly.
For more information and updates, please visit the wb site of the A-RARE forum