Care4BrittleBones aims to improve the quality of life of people with Brittle Bones Disease



The Care4BrittleBones values the relation with the OI community, sponsors, researchers and anyone who works on improving the quality of life of people with OI. We continually review the quality of our actions to ensure we realize the objectives of our foundation.
We are however aware that mistakes can be made either real or in perception. In case you are discontent with behaviours of one of our foundation members, our actions and / or any aspect of the activities we sponsor we request you to inform us soonest. Your comments will be taken seriously and together with you we will seek a suitable solution.

Solution by personal contact

Often issues / complaints can be solved by personal contact, either in person or by phone. We therefore recommend to seek personal contact as a first step to address any issue you may have.
In case this is not possible or you do not want to seek personal contact with a specific person we invite you to contact Henk Latour/Kees Mezouarour Data Privacy focalpoint (or Dirk-Jan Stegink (Finance manager) in case your complaint is about Henk Latour/Kees Mezouar).

Formal (email) Complaint procedure

Do you not want to solve your issue / complaint by personal contact or do you think your issue / complaint is not suitable for this approach, then we invite you to share your issue / complaint by email. Please send an email to Henk Latour/Kees Mezouar, our Data Privacy focalpoint (or Dirk-Jan Stegink ( Finance manager ) in case your complaint is about Henk Latour/Kees Mezouar). Complaints can also be raised anonymously by requesting a person you trust to send us your complaint and not disclose your identity. Every complaint will be treated in the same attention and respect, regardless how it is raised.
We request you to include the following information, when raising a complaint :
• Name ( organization)
• Name ( personal )
• Address
• Zip-code / City
• Telephone
• eMail address
• Description of the Issue / Complaint
• Desired solution / reaction
• Previous contacts with Care4BrittleBones on the Complaint / Issue
• Anything else that is important to share from your perspective
Alternatively you can share your issue / complaint by telephone with Dagmar Mekking ( our Director ). Please ensure you refer to this formal complaint procedure for further handling. Dagmar will send the email on your behalf , sending you a CC of the registered complaint.


• After receipt of your Issue / Complaint we will confirm receipt of your complaint
• We will register your complaint in the Care4BrittleBones complaint registry
• As a first step we will gather all facts not yet covered. This will include discussing the matter with the person(s) referred to in your complaint.

  • Follow up: Our objective is to come with a suitable answer / solution as soon as possible.
  • In most cases we will contact you within a few days to discuss next steps to be taken. Possibly you will be contacted for further information. Overall objective is to bring your issue / complaint within 3 weeks to a suitable solution. In case this deadline cannot be met you will be informed accordingly. You will be informed in writing of the outcome of the procedure.

The Complaints registry will be regularly discussed with the Care4BrittleBones Board to ensure full transparency about possible complaints and follow up of complaints.

Special cases

In special cases we may need to ask for external advise. We will do so with respect to secrecy as well as respecting your privacy. You will be informed about such external consultancy as it may cause delays in providing you with an adequate solution.

To conclude:

We have not received any complaints since Care4BrittleBones has been established in 2012. Whilst we are proud of this, we also wish to encourage anyone who may have questions or doubts about the ways of working of Care4BrittleBones to share them with us openly in any format! We see it as a way to support quality of life for people with OI and a way to help us learn and improve our own role in support of this goal.