CONSORTIUM
Partners
Spain

- Renata Linertová
- Lidia García-Pérez
- Cristina Valcárcel-Nazco
- Alezandra Torres-Castaño
- Ana Toledo-Chávarri
- Carmen Guirado-Fuentes
- Aránzazu Hernández-Yumar
- Yolanda Ramallo-Fariña

- Verónica Alonso-Ferreira
- Juan Benito Lozano
- Manuel Posada de la Paz
Hungary

- Márta Péntek
- László Gulácsi
- Zsombor Zrubka
Italy

- May El Hachem
- Giovanna Zambrano
- Andrea Diociaiuti
- Roberta Rotunno
- Marta Ciofi Degli Atti
Germany

- Cristina Has
France

- Christine Bodemer
- Smail HadjRabia
- Catherine Champseix
- Hélène Dufresne
Patient Advocacy Organizations
DEBRA International
(https://www.debra-international.org/)
DEBRA Spain
(https://www.pieldemariposa.es/)
DEBRA Germany
(https://www.ieb-debra.de/)
DEBRA France
(https://www.debra.fr/)
DEBRA Italy
(https://debraitalia.com/)
DEBRA Hungary
(https://debra.hu/)
Collaborator

Bulgarian Association for Promotion of Education and Science (BAPES)
Bulgaria
BAPES launched the Information Centre for Rare Diseases and Orphan Drugs, ICRDOD (2004), the “RareDis” Medical Centre (2009) and the Centre for Health Technology Assessment and Analysis, CAHTA (2013). The group participated in BURQOL-RD and in all major EC projects in RD.
BUR-EB STUDY GROUP:
- Rumen Stefanov
- Georgi Iskrov
- Georgi Stefanov