Dr. María del Mar Mañú Pereira, Scientific Coordinator of ERN-EuroBloodNet and Principal Investigator of the Childhood Cancer and Hematological Diseases Research Group at the Vall d'Hebron Research Institute (VHIR), has assumed the presidency of the Coordinators' Group TRIO of the 24 European Reference Networks (ERNs), a position she will hold for one year. This appointment recognises her leadership within the European rare disease community and will enable her to contribute to defining the common strategy of the ERNs together with the European Commission and the Member States.

On 1 July, coinciding with the beginning of her mandate, Dr. Mañú participated at the European Parliament in the event Health without Postcodes - Accelerating Access to Rare and Complex Disease Therapies in Europe, where she moderated the final debate between Members of the European Parliament focused on equitable access to treatments for people with rare and complex diseases.

Created by the European Commission in 2017, the European Reference Networks are virtual networks that connect centres of expertise across Europe with the aim of improving the diagnosis, treatment and care of people with rare or complex diseases. ERN-EuroBloodNet is the network dedicated to rare haematological diseases and promotes collaboration among professionals and institutions to advance research, share knowledge and ensure specialised care for patients.

Strategic leadership for the 24 European networks

The Coordinators' Group brings together the coordinators of the 24 European Reference Networks and is the main body responsible for guiding the strategic development, governance and implementation of the ERN system. It also serves as a coordination platform between the different networks and advises the European Commission and the Member States on policies related to rare diseases.

The group's presidency is organised through a TRIO leadership model, consisting of the outgoing presidency, the current presidency and the incoming presidency, ensuring continuity of projects and long-term strategic planning.

As president, Dr. Mañú will co-chair the group's meetings together with the European Commission, promote the shared priorities of all the networks and oversee the work of the Steering Group, made up of the leaders of the different working groups. Her responsibilities also include promoting initiatives to strengthen collaboration between the ERNs, harmonising clinical practices and continuing the development of this highly specialised European model of care.

"Taking on this responsibility represents an opportunity to help shape the future of the European Reference Networks and to continue working so that people with rare and complex diseases have access to high-quality specialised care, regardless of where they live," says Dr. Mar Mañú.

New responsibility within the European Hematology Association

In addition to this appointment, Dr. Mañú has recently joined the European Affairs Committee (EAC) of the European Hematology Association (EHA), the committee responsible for guiding the society's scientific policy, regulatory and institutional advocacy activities at the European level.

This body brings together haematologists, patient representatives and experts from several European countries to promote policies that support research, quality of care and access to innovation in haematology. Its members are selected through an open call and serve a three-year term.