Subject Access Request Procedure

DE will supply to any individual personal data held relating to them if a valid request is made.

The time limit for complying with an access request is 40 days.

DE have appointed a Coordinator who will be responsible for responding to the access request. A description of the functions and responsibilities of the Coordinator should be circulated within the organisation and staff should be advised of the necessity for co-operation with the Coordinator.

All subject access matters should be submitted to the Coordinator, either in writing at

Data Subject Access Request,
Dystonia Europe
Square de Meeus 37, 4thfloor
B-1000,
Brussels,
Belgium

or via email to sec@dystonia-europe.org.

A maximum fee of €6.35 may be requested if a request is manifestly unfounded, excessive or repetitive.

The Coordinator will:

  • Check that sufficient material has been supplied to definitively identify the individual. This is most important. This may be the signature, a Passport ID number in combination with name and address or date of birth. It should not be possible for a third party to provide the material to lodge a false access request.
  • Check that sufficient information to locate the data has been supplied. If it is not clear what kind of data is being requested the data subject will be asked for more information. This could involve identifying the databases, locations or files to be searched or giving a description of the interactions the individual has had with the organisation.
  • Log the date of receipt of the valid request.
  • Keep note of all steps taken to locate and collate date.
  • If data relating to a third party is involved, DE will not disclose without the consent of the third party or anonymise such data if this would conceal the identity of the third party. An opinion given by a third party may be disclosed unless it is an opinion which was given in confidence on the clear understanding that it would be treated as confidential.
  • Monitor process of responding to the request – observing time limit of 40 days.
  • Supply the data in an intelligible form (include an explanation of terms if necessary). Also provide description of purposes, disclosees and source of data (unless revealing the source would be contrary to the public interest). Number the documents supplied. The response will be “signed-off” by DE’s Executive Director.

DE will regularly review our procedures and processes.