ENERCA means easy access to a high quality information on rare anaemias for patients, citizens, health professionals, stakeholders, authorities and pharmaceutical industry.
April 7, 2015
On August 2014, orphan designation was granted by the European Commission to Centro de Investigaciones Energéticas, Medioambientales y Tecnológicas-Centro de Investigación Biomédica en Red de Enfermedades Raras and Instituo de Investigación Sanitaria-Fundación Jiménez Díaz (CIEMAT/CIBERER/IIS-FJD), Spain, for the “lentiviral vector containing the human liver and erythroid pyruvate kinase (PKLR) gene” for the treatment of pyruvate kinase deficiency.
March 18, 2015
The EURORDIS Awards recognize the contribution of patients’ associations, caregivers, volunteers, scientifics, media and companies that contribute day-by-day, hand-in-hand to reducing the impact of rare diseases on people’s lives.
April 25, 2015
April 29 - May 2, 2015