We would like the present the first board of directors for ICFDMAS. Below you will find the members:
Director
Prof. Dr. Natasha Appelman-Dijkstra
Prof. Dr. Natasha Appelman-Dijkstra is an internist-endocrinologist from Leiden University Medical Center (LUMC), the Netherlands. She has worked at the LUMC since 2012 where she specializes in Bone and Mineral conditions since. Natasha leads the LUMC multidisciplinary FD/MAS team and has published many studies with her team on FD/MAS. Natasha is also the lead of the European Registry for Rare Bone and Endocrine Conditions (EuRREB) which developed a special disease specific module for FD/MAS to collect clinical and patient reported outcomes (launched 2023). She serves at the medical and scientific board of the Dutch FD patient association from its start.
Director
Rolf J Ledal
Rolf J. Ledal is one of the founding members of the Norwegian patient association. After being diagnosed with Craniofacial Fibrous Dysplasia in 2012, he initiated FDMAS Norway, which was officially launched in 2016. In 2024 he also was part of founding Rare Bones Norway – RaBoNor – a forum for cooperation between rare bone disease patient associations in Norway. After 30 years of service in the Norwegian defence forces, he retired as a commander in 2016 and left a long career within radar-based weapons systems and logistics. During his time in the Norwegian defence forces he also had 12 years as an ombudsman in Befalets fellesorganisasjon, the largest trade union for military officers and non-commissioned officers in Norway. In his daily life he is the general secretary of the Norwegian Brain Tumour Association (NorBTA) and works closely with researchers and specialists for better patient involvement in research, as well as leading the small three person secretary of NorBTA. He has a bachelors degree in automation and electrical engineering, officer candidate school and junior staff college. Rolf joined the board in 2025.
Member
Michael Collins
Michael Collins is an endocrinologist who specialized in bone disorders. He has dedicated > 20 years of work in caring for and studying patients with FD/MAS at the United States National Institutes of Health. His work has been instrumental in both developing treatments and establishing the standard of care of patients with FD/MAS. He has worked closely with patient groups including the MAGIC Foundation, the FD/MAS Alliance and now the International Consortium for FD/MAS.
Member
Martine Dekker- Grootveld
Martine Dekker- Grootveld is one of the founding members of the Dutch FD patient association. After being diagnosed with Fibrous Dysplasia in 2011 she initiated the Dutch FD patient association which was officially launched in July, 2016. Since the beginning she has worked closely together with specialists, researchers and other patient associations, both on a national as well as on an international level. Her aim is to connect specialists, researchers and patients in order to encourage research and enhance treatment of patients. In her daily life Martine is a CCO with a bachelor degree in International Management.
