Written by Ingunn Westerheim, OIFE President

Why a new Advisory Board? 

Since we established the first Medical Advisory Board of OIFE in 2018, OIFE has gone through a lot of changes. We have grown to include 41 member organizations, we have more funding to do more activities, we have grown a large network of researchers, clinicians, industry members and volunteers and we are more involved in clinical trials and other research projects – primarily on the advisory side.

The landscape around us has also changed – with new collaborators, new challenges and new opportunities. Because of this, our needs for advice have changed substantially.

Who is in the new Advisory Board?

We have therefore restructured our Medical Advisory Board into a new Advisory Board, which will serve for the next two years. The new Advisory Board is a group of 20 people from 16 different countries divided in 3 subgroups: medical, scientific and patient experts.

MEDICAL GROUP 

• Darko Anticevic, Croatia
• Fatima Godinho, Portugal
• Gabriel Mindler, Austria
• Geert Mortier, Belgium
• Jerzy Konstantynowicz, Poland
• Lena Lande Wekre, Norway
• Miguel Rodriguez Molina, Spain
• Oliver Semler, Germany
• Veselin Boyadzhiev, Bulgaria
• Zagorka Pejin, France

SCIENTIFIC GROUP 

• Antonella Forlino, Italy
• Dimitra Micha, The Netherlands
• Lars Folkestad, Denmark
• Lidiia Zhytnik, Estonia
• Moira Cheung, UK
• Suja Somanadhan, Ireland

PATIENT EXPERTS 

• Claudia Finis, Germany
• Inger-Margrethe S. Paulsen, Norway
• Taco van Welzenis, The Netherlands
• Kis Holm Laursen, Denmark

Examples of things we could seek advice on:

• Advice on how treatment and care for OI is provided in X & Y country
• Policies and strategy planning
• Input for OIFE events (topical meetings, investigator meetings etc)
• New scientific developments
• When and how to support/promote or inform about research
• Collaboration with the industry
• Development of medical content on our website

Welcome to the new Chair!

Dr. Lars Folkestad has kindly volunteered to take the leading role for the first period of time from January 2025 to December 2026. We hope you will support him in this position! We send a big thank you to professor Oliver Semler, who has been our important MAB chair since 2018. He has asked to step down as the chair, but will still be part of the group, something we are very grateful for.

We would also like to express a warm welcome to the other members of the new Advisory Board of OIFE! We look forward to collaborating with you in the coming two years!