Who is responsible for your data
CACNA1A European Association, NIF G05631338. Email: info@cacna1a.eu.
What data we collect and why
- Family network form: name, email, country, your relationship with CACNA1A and, only if you choose to give it, the genetic variant. We use it to welcome you to the network, put you in touch with other families and send you relevant information.
- Membership form: name, email, phone and membership type, to process your application under our statutes.
- Contact and professional forms: name, email, institution, role and your message, to answer you.
Health data
The genetic variant is health data, a special category under Article 9 of the GDPR. We only process it if you give your explicit consent by ticking the specific box. It is never published, it is not sent by email and only the board can access it. You can withdraw your consent at any time.
Legal basis
Your consent (Art. 6.1.a and 9.2.a GDPR) and, for members, the membership relationship under the statutes (Art. 6.1.b GDPR).
How long we keep it
While you are part of the network or a member, and afterwards for the time required by law. Contact messages are deleted when they are no longer needed, at most two years later.
Who we share it with
We do not sell or give your data to anyone. Our hosting provider (Hostinger) and email provider process data on our behalf under data processing agreements. We will never share your data with researchers or other organisations without asking you first.
Your rights
You can access, rectify, erase, restrict or object to the processing of your data, request its portability and withdraw your consent by writing to info@cacna1a.eu. If you think we have not handled your data properly, you can complain to the Spanish Data Protection Agency (aepd.es) or the Catalan Data Protection Authority (apdcat.gencat.cat).