A human genetic diagnosis has confirmed that you or your child has a rare genetic disease
The report of the human genetics laboratory contains a QR code for FindMe2care.
What is that good for?
FindMe2care is a medical contact platform. After registration and scanning your personal QR code, you can be found via the platform in order to:
- receive information tailored to your individual rare disease,
- be informed about current treatment options,
- receive information on patient organizations that are suitable,
- receive inroamtion on the appropriate patient registry,
- be made aware of clinical studies or scientific research projects that are looking for patients with your specific disease.
An independent board of experts checks all enquiries to the FindMe2care platform in andvance and ensures that only serious contacts are forwarded to you.
What about data protection?
FindMe2care does not pass on any data – it is a virtual platform on which scientists and organizations that are currently researching rare diseases and providing help can get in touch with affected patients. As a patient, you decide for yourself who you want to be found by.
Data is stored in strict compliance with data protection regulations:
- Patients retain sovereignty over their data.
- FindMe2care is bound by 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 it.
- Due to this limiation of purpose, any other use of the date (e.g. “monetization”) is excluded.
Who is legally behind FindMe2care?
FindMe2care is a non-profit organisation. Further information can be found here.