Patient Advisory Board
The Patient Advisory Board consists of patient representatives who have knowledge and experience with one of the rare endocrine or bone/mineral conditions we report on in our registries. Members will also represent the interests of patients and rotate through the Steering Committee, Data Access Committee and Study Groups and report to the other members of their respective committees at the PAG.
We are always looking for more people to join our board, so please contact us at registries@lumc.nl.
| Name | Organisation | Country |
|---|---|---|
| Arlene Smyth | Office for Rare Conditions, Glasgow and Turner Syndrome Support Society, UK, ePAG Endo-ERN | UK |
| Claudia Finis | OI Foundation, ePAGÂ ERN BOND | Germany |
| Elisa Vitella Meschi | AIMEN 1&2 | Italy |
| Gaby Doxiadis | Dutch FD/MAS foundation | The Netherlands |
| Giorgio Dal Maso | ePAGÂ Endo-ERN | Italy |
| Ines Alves | ANDO Portugal, ePAGÂ ERN BOND | Portugal |
| Ingunn Westerheim | OIFE | EU wide |
| Jamie Watson | Fibrous Dysplasia Support Society | UK |
| Johan De Graaf | Dutch Pituitary Foundation, e-PAGÂ Endo-ERN | The Netherlands |
| Magdalena Caballero Campos | Fibrous Dysplasia | Spain |
| Marco Sessa | Achondroplasia foundation | Italy |
| Marta Barańska | The Pituitary Gland Association Poland, ePAG Endo-ERN | Poland |
| Martha Kirchhoff | Phosphatdiabetes E.V., ePAG Endo-ERN | Germany |
| Nerea Arrieta Urriategi | Fibrous Dysplasia | Spain |
| Oliver Gardiner | XLH Alliance | UK |
| Petra Brügmann | EMENA, Network Pituitary and Adrenal Disorders, ePAG Endo-ERN | Germany |
| Rebecca Skarberg | OIFE, ePAGÂ ERN BOND | Norway |
| Taco van Welzenis | OIFE | The Netherlands |
| Tenna Toft | XLH Alliance, ePAGÂ ERN BOND | Denmark |