Patient Advocacy Groups (And Contacts)

Two patient advocacy groups are involved in this study: The German Glaucoma Patient Society (BvGS e.V.) in Dortmund and Orphanet in Paris France.

Bundesverband Glaukom-Selbsthilfe EV

bvgsNicole Stege is the treasurer and contact point for the Glaucoma Initiative within the Bundesverband Glaukom Selbsthilfe e.V.

Bundesverband Glaukom-Selbsthilfe e.V.

Im Ärztehaus
Wißstraße 9
44137 Dortmund

Patient forum: www.glaukom-forum.net

Internet: www.bundesverband-glaukom.de

ORPHANET – INSERM US14

Ségolène Aymé, Emeritus director of research, Director of International Affairs at Orphanet, Chair of the Topic Advisory Group on Rare Diseases at WHO, Project leader of Support IRDiRC, and Editor in chief of the OJRD, sits on the Scientific Advisory Board of the study

www.orpha.net