President
Ms. Birthe Byskov Holm (The Osteogenesis Imperfecta Society of Denmark)

Member of the Board
Mr. Christian Rothe Schultz (The Danish Association for Crouzon Syndrome)

Member of the Board
Ms. Liselotte Wesley Andersen (The Danish Tuberous Sclerosis Association)

Member of the Board
Ms. Lærke Olsen (Danish Association for Neurofibromatosis Recklinghausen)

Member of the Board
Ms. Mariette Rytter Larsen (Danish Organization for Fabry Patients)

Substitute to the Board
Ms. Birthe Persson (Danish Association for Albinism)
Mr. Kjeld Christensen (The Danish Tourette Syndrome Association)
Mr. Sven Fandrup (The Danish Association for Immunodeficiencies)
Ms. Maria Krogh (Danish Gaucher Association)