Comunicación

Session on “Innovative Experiences in the Defense of Human Rights: Data Protection and Rare Diseases”

Date: September 20, 2013.
Venue:: Centro de Referencia Estatal de Atención a Personas con Enfermedades Raras y sus Familias (CREER), Burgos.

 

Continuing with the Fernando Pombo Foundation’s commitment to defend and protect the rights of individuals with rare diseases together with the Spanish Federation for Rare Diseases (FEDER), Isabela Crespo, a Gómez-Acebo & Pombo lawyer and Fernando Pombo Foundation volunteer, will participate in the Training Program “Forming leaders, inspiring action in rare diseases” (organized by FEDER and CREER), with a session entitled “Innovative Experiences in the Defense of Human Rights: Data Protection and Rare Diseases”.

 The objective of this session is to raise awareness of the main legal requirements in terms of data protection and to analyze their effects on rare disease research, patient registries and European Regulations.

Program