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

Data privacy statement

My Privacy

Care4BrittleBones deeply values the protection of privacy of the OI community, our sponsors and everybody else that support us. Private data of the OI community, our sponsors and everybody else that support us, if stored, is therefore treated with the utmost care and robustly secured. Within the group of volunteers that support us we have defined and implemented the role of Data Privacy Officer as well as the role of Security Officer.

Processing of Private Data

In line with the Foundation’s statutory objectives Care4BrittleBones builds a community of persons with OI and their relatives. This community is kept up to date with developments related to OI as well as involved with fundraising activities to support the urgently required research into OI. Community members can deliver input related to the research policy / approach and are (through the Advisory Board) involved in the selection of specific research projects. For this reason Care4BrittleBones processes contact data of the members within the OI community. This data is retained for the long term as OI is -at this point in time- incurable and therefore there is a justified need to retain the data for a long period with the purpose to improve the Quality of life of people with OI.

Care4BrittleBones uses email addresses that are shared with us to invite persons to accept our newsletter. Each version of the newsletter has an option to opt-out.

Care4BrittleBones organizes events to support / finance its objectives. For the organization of these events Care4BrittleBones uses contact data of “volunteers”, “Participants” (e.g. runners, dinner guests) as well as OI community member data for communication purposes. Care4BrittleBones may use this data as well for the organization of future events and activities.

Participants of events and individual sponsors (if known) can be invited to become a “Care4BrittleBones Friend”. Data of “Care4BrittleBones Friends” is stored and processed to build and support a long term and sustainable relationship. The data is used to inform Care4BrittleBones Friends of activities in line with their personal interests.

Next to fore-mentioned processing of private data, Care4BrittleBones also stores and processes data in accordance with legislation of The Netherlands (E.g. legal retention periods of financial data).

Care4BrittleBones builds and maintains a unique database of professionals and persons active in the field of OI (doctors, providers of specific care for OI patients, research institutes, governmental bodies, Pharmaceutical companies and associated industry) . This information is managed with adequate controls in place.

Your rights as per AVG / GDPR

• Right to enquire: at your request Care4BrittleBones will inform you what private data we have stored related to you.
• Right to correct : in case Care4BrittleBones stored data about you incorrectly we will change this data at your request.
• Right to be forgotten: at your request we will remove your data however subject to applicable legislation.
For this purpose you can use the email address

Clicking behavior

The Care4BrittleBones Foundation’s website does not identify visitors. We however use Google analytics to gather statistics on visitor behaviors with the purpose to improve our website.

Usage of cookies

To enable the visitor’s experience when accessing the information on the Care4BrittleBones website, the website can make use of Cookies. Cookies are little files that are stored on your computer that contain certain data elements that serves your visitor’s experience when accessing the website.

Care4BrittleBones and other websites

The Care4BrittleBones website contains links to other websites. The Care4BrittleBones Foundation is not responsible for how these websites (and parties that manage them) handle your private data. Consult the individual privacy statements – if any – of the website that you visit.


Questions and / or remarks on our Privacy policies / statement can be addressed to us by phone or

Changes to this Privacy statement

The Foundation Care4BrittleBones reserves the right to make changes to this privacy statement. We therefore recommend that you regularly check the Care4BrittleBones privacy policy as explained by this privacy statement on