TNGB and Patient Organisations

Italian Version

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 recently published on Orphanet Journal of Rare Diseases (see Documents). This experience has also been orally presented at the Europe Biobank Week 2016 (see presentation “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.

Current agreements

Each agreement is published in the Documents section.

  1. Dec 2009: Ring 14 International and Galliera Genetic Bank (TNGB Partner 1)
  2. Jun 2012: Federazione Italiana Prader Willi and Genomic and Genetic Disorders Biobank (TNGB Partner 7)
  3. Jul 2012: Associazione Italiana Mowat Wilson and Galliera Genetic Bank (TNGB Partner 1)
  4. Jul 2012: Associazione Nonsolo15 (dup15q s.) and Galliera Genetic Biobank (TNGB Partner 1)
  5. May 2013: Gruppo Famiglie Dravet and Galliera Genetic Bank (TNGB Partner 1)
  6. Oct 2013: Associazione Sindrome di Alport and Cell lines and DNA bank of Rett syndrome, X-linked mental retardation and other genetic diseases (TNGB Partner 3)
  7. Nov 2013: Associazione Italiana Rett and Cell lines and DNA bank of Rett syndrome, X-linked mental retardation and other genetic diseases (TNGB Partner 3)
  8. Feb 2014: Associazione Italiana Sindrome di Poland and Cell line and DNA Biobank from patients affected by Genetic Diseases (TNGB Coordinator)
  9. May 2014: ILA - Associazione italiana Angiodisplasie ed Emangiomi Infantili (Vascular malformations) and Cell lines and DNA bank of Rett syndrome, X-linked mental retardation and other genetic diseases (TNGB Partner 3)
  10. Oct 2014: LND Famiglie Italiane (Lesch-Nyhan d.) and Cell line and DNA Biobank from patients affected by Genetic Diseases (TNGB Coordinator)
  11. Jan 2015: F.O.P. Italia Onlus (Fibrodysplasia ossificans progressiva) and Cell line and DNA Biobank from patients affected by Genetic Diseases (TNGB Coordinator)
  12. May 2015: AISNAF onlus (Neurodegeneration with brain iron accumulation) and Cell line and DNA Bank of Genetic Movement Disorders and Mitochondrial Diseases (TNGB Partner 9)
  13. Jul 2015: ASSI Gulliver - Associazione Sindrome di Sotos Italia and Galliera Genetic Bank (TNGB Partner 1)
  14. Mar 2017: AISK - Associazione Italiana Sindrome Kabuki and Genomic and Genetic Disorders Biobank (TNGB Partner 7)