Privacy Policy

1. Data Controller

Provisional Holder: Promoter initiative of Fundación Privada COR Foundation (in the process of incorporation).

Provisional Address: Avinguda de Cerdanyola 75 Etlo Izquierda, 08172 Sant Cugat del Vallès, Barcelona, Spain.

Contact Email: info@corfoundation.org 

2. Purposes of Data Processing

  • At COR Foundation, we process information provided by interested parties for the following purposes:
  • Contact & Inquiry Management: Responding to information requests, inquiries, or suggestions sent via email or website forms.
  • Patient and Family Network: Coordinating contact with families affected by ACTL6B or other nBAF complex mutations who wish to request information or voluntarily collaborate with the foundation.
  • Scientific Project Participation & Sample Collection: Managing outreach and contact with users who explicitly express interest in participating in natural history studies or donating biological samples (DNA and fibroblasts).
  • Dissemination: Sending updates, activity notices, or scientific progress promoted by the foundation when the user has requested or explicitly consented to it.

3. Legal Basis for Processing

The user’s unambiguous consent provided upon submitting an inquiry, subscribing to communications, or requesting inclusion in initiatives.

Enhanced Explicit Consent: For processing special categories of data (such as health information or diagnostic details voluntarily provided by families), the legal basis is the explicit consent given by the data subject or their legal representative.

4. Data Retention

Personal data provided will be stored for as long as necessary to fulfill the purpose for which it was collected and to determine potential liabilities deriving from such purpose and processing. For dissemination subscriptions, data will be kept until the user requests deletion.

5. Recipients and Health Data

Data will not be transferred to third parties outside the entity, except under legal obligation.

Within the framework of scientific research, collected health or scientific data will be properly anonymized or pseudonymized prior to any collaboration or sharing with research centers, biobanks, or allied scientific entities, always ensuring maximum protection of patient identity.

6. User Rights

Any individual has the right to obtain confirmation as to whether COR Foundation is processing personal data concerning them. Users have the right to:

  • Access their personal data.
  • Request rectification of inaccurate data.
  • Request erasure when, among other reasons, the data is no longer necessary for the purposes for which it was collected.
  • Request restriction of processing.
  • Object to processing.
  • Request data portability.

To exercise these rights, you may send an email to info@corfoundation.org attached with a copy of your ID document or equivalent credential. You also have the right to lodge a complaint with the Spanish Data Protection Agency (AEPD) at aepd.es if you consider that the processing does not comply with current regulations.