On January 30th, the Ministry of Health, Consumption and Social Welfare headquarters accepted the “European Reference Networks: An Integral Challenge” Conference, which was organised by the Spanish Federation for Rare Diseases (FEDER) and attended by the International Association of People Affected by Lipodystrophies and Their Relatives (AELIP). Specifically, its president, Naca Eulalia Pérez de Tudela, attended this conference, which included some interesting speeches, as well as working groups that tackled different issues.
The conference helped to analyse the challenges and opportunities of European Reference Networks and of ePAGs(European Patient Advocacy Groups).
European Reference Networks (ERNs) are virtual networks that bring together healthcare providers from all over Europe to confront diseases that require a highly specialised treatment and a high concentration of knowledge and resources, as rare diseases do.
Representatives fromsome 80 associations and organisations of rare diseasestook part in this conference, with the goal of furthering our country’s participation in this project as well as the opportunities it presents for the Spanish movement.
Among other matters, the following topics were each addressed: the place that the networks occupy within the EU policy framework; the appointment and accreditation process of ERNs; and membership formulas, or requirements and implications of forming part of the networks from a clinical perspective. Additionally, what ePAGs are was also delved into, as were the current forms of participation of ERN patients.
In other news, the integration of the networks into the Spanish National Health System and how to face the main challenges that ERNs present were also addressed. These challenges include all qualified hospital centres being able to participate, incorporating research into ERNs, and all patients being able to gain real access to the knowledge available within the Network.
