| Names | Country | Affiliation |
Dawn M. Baumgardner and Kathleen Kilcoyne Vroman Marie Arturi |
USA | DBA Foundation Daniella Maria Arturi Foundation |
| Leisa Batkin, Martin Winter and Peter Redmond | UK | DBA UK Charity diamondblackfan.org.uk |
| Wilma Rzany, Rosemarie Behling and Beate Buchholz | Germany | Diamond-Blackfan-Anämie-Selbsthilfegruppe diamond-blackfan.de |
| Marcel Hibert | France | Association Francophone de la Maladie de Blackfan-Diamond afmbd.org |
| Maria Elisabetta Villa | Italy | DBA Italia ODV www.fondazionedba.org |
| Carlos Carrión Martín and Susana Pont Quesada | Spain | Asociación Afectados Blackfan Diamond España anemiablackfandiamond.org.es |
| Sofia Thoren, Patrick and Camilla Fors | Sweden | Swedish DBA patient group www.facebook.com/groups/472777966082065 |
| Boris Marte and Marianne Marte-Hofbauer | Austria | Austrian support group https://dbaexperiment.org |
| Tingting Deng and Xiaomei Jia | China | Organization for Rare Disorders and Ai You Foundation |
| Ivana Kyselkova and Jiri Heczko | Czech Republic | |
| Jukka von Hertzen | Finland | |
| Hans Bruun Dabelsteen and Heidi Mia Kirkebye | Denmark | |
| Janet Pereira and Carol Manfini | Canada | DBA Canada www.dbacanada.com |
| Jessica Bond | Australia | Maddie’s Vision www.mrv.org.au |