Data protection

Your medical information is highly confidential. Data is stored in strict compliance with data protection regulations.

Detailed information can be found in the FAQs and data protection documents:
Data protection information for patients
Data protection declaration

The data protection concept of the FindMe2care project was developed in conjunction with a consultation by the TMF e.V. data protection working group and was finally evaluated positively by this committee. The concept was categorised as compliant with the current state of regulations and technology and was deemed appropriate for the processing of sensitive medical data.

The basic principle is: Patients retain sovereignty over their data.

FindMe2care does not pass on any data – it is a virtual contact platform.

Scientists and organizations that are currently researching rare diseases and providing help can use this platform to pass on targeted information to patients with specific genetic diagnoses or make contact requests.

Your personal data will remain unknown to the enquirers. You yourself decide which contact request you would like to respond to. As a patient, you, therefore, decide for yourself who you would like to be found by.

FindMe2care is bound to the General Data Protection Regulation (GDPR). Patients give the platform their earmarked consent to use the data exclusively for the above-mentioned contacting, also on the condition that no third party has access to the data. Due to this purpose limitation, any other use of the data (e.g., “monetization”) is excluded, as for any use of the data beyond the terms of use, additional consent would have to be obtained from the patient.