TNGB and Patient Organisations


Since its inception, the TNGB has developed a close relationship with Patient Organisations in particular with UNIAMO FIMR (Italian Federation of about 100 Patient Organisations with rare diseases) to raise the interest in Biobanks' services as well as to introduce patients and their families to the concept that the Biobanks are an effective service for collecting and centralising rare samples for specific research projects.

Thanks to this interaction, interest and trust in the Biobanks’ services are enormously increased among patients and their families. In fact, several agreements have been formalised between one of the TNGB Biobanks and a specific Patient Organisation.

To allow the adequate understanding of all biobanking procedures, TNGB reviewed the informative for the expression of the consent with the Patient Organisations’ representatives within the "Determinazione rara" project.

A research manuscript reporting on TNGB experience with Patient Organisations has been published on Orphanet Journal of Rare Diseases (Baldo et al, Orphanet J Rare Dis. 2016;11(1):142).

This experience has also been orally presented at the Europe Biobank Week 2016 (Baldo C, The alliance between genetic biobanks and patient organisations: the experience of the Telethon Network of Genetic Biobanks).

A leaflet on TNGB is also available in the Documents section.