Names Country Affiliation

Dawn M. Baumgardner and Kathleen Kilcoyne Vroman 

Marie Arturi

USA

DBA Foundation
dbafoundation.org

Daniella Maria Arturi Foundation
https://www.facebook.com/daniellafoundation/

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