The VUmc is the only FOP expertise center of the Netherlands. Patients are checked yearly by their specialist (dr. Marelise Eekhoff). Important organ functions will be checked during this visit. A [18F]NaF  PET/CT-scan may be performed to evaluate the activity of disease, and furthermore extensive bloodtests, lungfunction tests and an echography of the heart may be performed. 
The extend of this care has been established in collaboration with the Dutch FOP society and the patients themselves.

For any acute medical questions: please reach out to drs. Esmée Botman, doctor and researcher, EMW Eekhoff MD PhD, endocrinologist and Prof. dr. JC Netelenbos, endocrinologist. You can call the VUmc (+31(0)20-4444444) and be put through to one of the names mentioned above.

For general questions you can send an email to Drs. Esmée Botman, Dr. EMW Eekhoff or Prof. dr. JC  Netelenbos will respond as soon as possible.

FOP Expertise center VUmc

The Dutch government has acknowledged the VUmc as a FOP expertise center since 2015. This has been an initiative of dr. EMW Eekhoff, affiliated to the department of endocrinology. Many different specialists from different disciplines are part of our Amsterdam FOP-team.

Our team is represents its care and research in the European FOP consortium and in the near future also in the Rare Bone Disease ERN-Bond.

Please find below the list of all members of the VUmc FOP-team

Dr. EMW Eekhoff, internist-endocrinologist;
dr. Micha Dimitra and prof. dr. Gerard Pal, clinical genetics; 
dr. Nathalie Bravenboer, clinical chemistry; 
dr. Pieter Koolwijk, Physiologist
prof. dr. Coen Netelenbos, drs. Esmée Botman, student Max Hoebink, endocrinology; 
dr. Pim de Graaf, dr. Pieter Raijmakers, drs. Bernd Teunissen en prof. dr. Adriaan Lammertsma, prof. dr. Guus van Dongen, Department of Radiology and Nuclear Medicine; 
prof. dr. Tim Forouzanfar,  drs. Marjolein Gilijamse,  oral and maxillofacial surgery; 
dr. Jan Maerten Smit, plastic surgery; 
dr. Teun J. de Vries en Ton Schoenmaker, parodontology ACTA; 
dr. Lothar Schwarte  en drs. Wouter Lubbers, anesthesiology;
Prof. dr. Thomas Rustemeyer, dermatology and immunology, 
drs. Thierry Sampimon, dermatology;
dr. Ir. Cas Smits, clinic physicist-audiologist;
dr. Arend Bökenkamp, pediatrician
dr. Anco Boonstra, pulmonologist;
dr. Jakko van Nieuwenhuijzen, urologist;
dr. Louise Sabelis, rehabilitation specialist;
dr. Guus Eeckhout, psychiatrist;
dr. Patrick Thoral, intensivist;
dr Marieke Visser, neurologist;
dr. Chris Dickhoff, surgeon;
Ivette Sprengers, ER nurse;
dr. Otto Kamp, cardiologist;
dr A. Bokekamp, pediatrician
dr. Robert van Es, oral and maxillofacial surgery, UMC Utrecht