Privacy policy


This Privacy Policy regulates the processing of personal data collected by ASOCIACIÓN ESPAÑOLA DE LABORATORIOS DE MEDICAMENTOS HUÉRFANOS Y ULTRAHUÉRFANOS (AELMHU) through the forms provided on the Website. This Privacy Policy forms an integral part of the General Conditions.

The User guarantees that the personal data provided are true, accurate, complete and up to date, and shall be liable for any direct or indirect damage or harm that may be caused as a result of non-compliance with this obligation.

In the event that the data provided allows a third party to be identified, the User expressly guarantees that he/she has informed said third party of the purposes for which his/her data is made available to AELMHU and that he/she has obtained his/her consent to do so. AELMHU shall not be liable for the User's failure to comply with the aforementioned requirements or for any consequences that may arise therefrom.

With regard to the personal data requested through the forms provided, it will be necessary for the User to provide at least those marked with an asterisk, since, if these data considered necessary are not provided, AELMHU will not be able to accept and manage the request.

Who is responsible for the processing of the User's personal data?

Identity: Spanish Association of Orphan and Ultra Orphan Drugs Laboratories

Trade name: AELMHU

Postal address: C/Muntaner, núm. 292, 1º 2ª, 08021, Barcelona. Telephone: +34 681 384 549

Registration details: National Register of Associations of Madrid, Group 1, Section 1ª, no. 599620.

Applicable regulations

AELMHU will carry out the processing of personal data in accordance with the precepts set by the data protection regulations in force, namely: Regulation (EU), 2016/679, of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data and repealing Directive 95/46/EC (General Data Protection Regulation, GDPR), Organic Law 3/2018, of 5 December, on the Protection of Personal Data and Guarantee of Digital Rights (LOPDGDD).

For what purpose do we process the User's personal data?

The personal data collected through the Website will be incorporated into files owned by AELMHU for the purpose of managing Users and attending to their requests and queries.

In more detail, AELMHU may process your data for the following purposes:

  • To manage the associative activity and the carrying out of activities directly or indirectly related to AELMHU.
  • Regularly inform you (by electronic means, telephone or post) of news and initiatives related to AELMHU).
  • Management and processing of queries, requests, suggestions or complaints.

To which recipients will your data be communicated?

AELMHU informs you that your data may be communicated to its national and international affiliates, provided that such communication is necessary for the proper fulfilment of the purpose for which the data were requested. Likewise, the data will be communicated to third parties in those cases in which it is required by law.

How did we obtain your data?

The data that AELMHU will process are those that you voluntarily provide through the form found on the Website and those that, where appropriate, are derived from your relationship with AELMHU.

What is the legitimacy for the processing of your data?

The legal basis for the processing described above is based on the express consent of the User, which is expressed through the prior express acceptance of this Privacy Policy when the relevant box associated with the personal data collection form is ticked.

How long will we keep your data?

The data will be kept for the time necessary to deal with the queries made or while the consent of the User is valid. In addition, your data may be kept for the periods established to comply with the applicable legal obligations and during the period of limitation of legal actions, if applicable. Once the aforementioned periods have expired, the data will be deleted or may be kept blocked in a totally secure manner.

What are your rights when you provide us with your data?

The applicable data protection regulations grant you the exercise of rights in relation to the processing that AELMHU carries out with your personal data, which are as follows:

  • Right of access: to know what type of data we are processing and the characteristics of the processing we are carrying out.
  • Right of rectification: to be able to request the modification of your data if they are inaccurate or untrue.
  • Right of portability: to be able to obtain a copy in an interoperable format of the data being processed.
  • The right to the limitation of processing in the cases set out in the Law.
  • Right of erasure: request the erasure of your data when the processing is no longer necessary.
  • Right of objection: you may object to any processing which is justified in the legitimate interest of the parties.
  • In order to exercise the rights regarding data protection, or to revoke the consents given, the User may write to ASOCIACIÓN ESPAÑOLA DE LABORATORIOS DE MEDICAMENTOS HUÉRFANOS Y ULTRAHUÉRFANOS (AELMHU ) calle Muntaner, núm. 292, 1º 2ª, 08021, Barcelona, indicating as reference "Data Protection" and including his/her name, surname, copy of his/her ID card, an address for the purpose of notifications and the right he/she wishes to exercise.

The User may, in any case, lodge a complaint with the Spanish Data Protection Agency (, especially when he/she has not obtained satisfaction in the exercise of his/her rights.