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Pediatrician Rianne Oostenbrink has received the Rare Angel Award. She was presented with the award last Friday by the VSOP, on Rare Disease Day, for her efforts in the field of neurofibromatosis.  

A Rare Angel Award is given to someone who has made a special contribution to patients with a rare condition. Rianne is committed to children who have the rare condition neurofibromatosis. This is a genetic condition that causes tumors on nerve tissue.  

Proud

The Neurofibromatosis patient association (NFVN) nominated her for the award. According to chairwoman Ine Israëls, Rianne deserves the award because she is the driving force behind the NF1 Care Network, which consists of the Erasmus MC expertise center for neurofibromatosis type 1,eleven treatment centres and four intervention centres. In addition, it is committed to European cooperation and to the roll-out and implementation of new medication.  

Israëls: ‘Rianne is a very enthusiastic and knowledgeable person. She has given NF1 much more exposure. We are proud that she has won the Rare Angel Award.’  

Improve

Rianne herself is ‘very surprised and honoured’. ‘What I think is great is that the initiative comes from the patient association. That does mean something.’ According to Rianne, it reflects the collaboration between the expertise centre and the patient association. ‘We work together to improve care for patients with NF.’ She also calls this award a great incentive for the future, with a number of ongoing research projects and activities for the organisation of patient care, together with colleagues from ENCORE and the national NF1 expertise network. 

Film Rare Diseases Center 

Rianne can also be seen in the film of the Rare Diseases Center. Have you never seen it? Then it is definitely recommended to see it here.