The position paper on strengthening academic biobanks and patient participation in biomedical research, published last year by the German Biobank Node (GBN) together with several German patient organisations, has received further important support: the paper was presented at the 'Stakeholder Forum - Patient Pillar' of the European biobank network BBMRI-ERIC and met with broad approval.
As a result, twelve European patient organisations officially declared their support. In addition, the Patient Pillar Committee itself - in addition to BBMRI-ERIC - has officially endorsed the paper. This underlines the central importance of the issue not only at national but also at European level. The following Patient Pillar organisations support the position paper:
- Associazione Italiana Sindrome Di Poland (AISP)
- Cancer Patients Europe
- EPIONI – Greek Carers Network
- EURORDIS – Rare Diseases Europe
- FHchol Austria
- FH Europe – The European FH Patient Network
- Hellenic Cancer Federation (ELLOK)
- Ligue Huntington Francophone Belge
- Nätverket mot Cancer
- RaDiOrg – Rare Diseases Belgium
- Sällsynta diagnoser – Rare Diseases Sweden
- UNIAMO – Federazione Italiana Malattie Rare
Further strengthening at European level
The new support underlines the call for a long-term strengthening of academic biobanks and the consistent involvement of patient representatives in biomedical research at European level. Numerous national scientific organisations, patient representatives and the German government's patient commissioner, Stefan Schwartze, MP, had already endorsed the paper. The broad agreement at national and European level is an important signal, especially with regard to the future organisation of the research landscape.
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