The alliance between genetic biobanks and patient organisations: the experience of the telethon network of genetic biobanks.
Chiara BaldoLorena CasaretoAlessandra RenieriGiuseppe MerlaBarbara GaravagliaStefano GoldwurmElena PegoraroMaurizio MoggioMarina MoraLuisa PolitanoLuca SangiorgiRaffaella MazzottiValeria ViottiIlaria MeloniMaria Teresa PellicoChiara BarzaghiChiuhui Mary WangLucia MonacoMirella FilocamoPublished in: Orphanet journal of rare diseases (2016)
The TNGB experience has proven to be an example of good practice with regard to patient engagement in biobanking and may serve as a model of collaboration between disease-oriented Biobanks and Patient Organisations. Such collaboration serves to enhance awareness and trust and to encourage the scientific community to address research on RDs.