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	UK
Claudia Finis	OI foundation, e-PAG ERN BOND	Germany
Diana Kwast-Hoekstra	Nederlandse Hypofyse Stichting	The Netherlands
Elisa Vitella Meschi	AIMEN 1&2	Italy
Eva Åström	Karolinska Institutet, pediatrician	Sweden
Gaby Doxiadis	Dutch FD/MAS foundation	The Netherlands
Giogio Dal Maso	e-PAG ERN BOND	Italy
Ines Alves	ANDO Portugal, e-PAG ERN BOND	Portugal
Ingunn Westerheim	OIFE	EU wide
Jamie Watson	Fibrous Dysplasia Support Society	UK
Johan De Graaf	Nederlandse Hypofyse Stichting, e-PAG Endo ERN	The Netherlands
Magdalena Caballero Campos	Fibrous Dysplasia	Spain
Marco Sessa	Achondroplasia foundation	Italy
Martha Kirchhoff	Phosphatdiabetes E.V.	Germany
Nerea Arrieta Urriategi	Fibrous Dysplasia	Spain
Oliver Gardiner	XLH Alliance	UK
Petra Brügmann	EMENA	Germany
Rebecca Skarberg	OIFE, e-PAG ERN BOND	Norway
Taco van Wezelnis	OIFE	The Netherlands
Tenna Toft	XLH Alliance, e-PAG ERN BOND	Denmark