ASSOCIAZIONE COLLAGENE VI

Collaborations and partnerships
COLLABORATE

Caleidoscopio

Since May 2018, the ‘Associazione Collagene VI Italia APS’, in full awareness of the psychological implications for patients and family members in having to live with and manage a rare disease, has decided to activate a collaboration with Caleidoscopio – Centre for Cognitive Behavioural Psychotherapy, run by Dr Mazza and Dr Lo Sterzo. This will allow registered members in need of help to benefit from a subsidised rate.

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EURORDIS

As of May 2018, the ‘Associazione Collagene VI Italia APS’ has become a member of EURORDIS – European Rare Diseases Organisation! EURORDIS-Rare Diseases Europe is a unique non-profit alliance comprising over 700 rare disease patient associations from more than 60 countries working together to improve the lives of 30 million people living with a rare disease in Europe. By connecting patients, families and patient associations, bringing together all concerned parties and mobilising the entire rare disease community, EURORDIS amplifies the voice of patients and helps shape research, policies and services for patients.

TELETHON'S FRIENDLY ASSOCIATIONS

Since 2017, the Collagen VI Italia O APS Association has been part of Telethon’s Friendly Associations: it is a network of collaboration to progress together towards the cure of rare genetic diseases. As of today, there are more than 190 patient and family Associations in the network of Friend Associations who share the same values and objectives and meet every year at Riva del Garda to develop new projects, share and solve common problems.

FONDAZIONE TELETHON

In December 2017, the researcher Prof. Paolo Bernardi from the laboratory in Padua together with two patients, President Cecilia Sorpilli and Alessia Iannotti, both with Ullrich muscular dystrophy and belonging to the Collagen VI Italia APS Association, took part in the TV Marathon on Rai channels. Over the years, Telethon has financed 12 research projects on Collagen VI deficiency diseases for a total funding of 4 million euros.

UILDM

The Collagen VI Italia APS Association has undertaken a collaboration with UILDM in agreement with Marco Rasconi, UILDM President, and Stefania Pedroni, UILDM Vice-President, to implement psychological support groups for parents of children with neuromuscular pathologies, to explore the topic of ‘diagnosis communication’ and to promote University theses on the need for psychological support for patients and parents with neuromuscular disorders.

Medical Genetics Laboratory of Ferrara

 2017, the Collagene VI Italia APS Association formalised its collaboration with the Medical Genetics Laboratory of Ferrara which ensures accurate diagnoses and counselling so that, during the consultation in the outpatient clinic, the person concerned is given a leaflet informing patients and their families of the existence of other patients, numerous studies and research in an attempt to cure these diseases.

ORPHANET

Since 2015, the Collagen VI Italia APS Association has been included by Orphanet, the European information portal on rare diseases and orphan drugs, in the list of patient support organisations.