Spain speaks at European Conference on Rare Diseases

Spain reaffirmed its commitment to the development of the European research and care network on rare diseases, at a conference on Monday, June 27.

Spain’s Minister of Health, Carolina Darias spoke at the 11th European Conference on Rare Diseases and Orphan Products, where she highlighted some of the main advances in the national and European response to rare diseases.

Spain’s Ministry of Health took to Twitter to share footage of the conference:

“📺 @CarolinaDarias➡️ The Government of Spain is committed to the development of the Care and Research Network 🇪🇺 that will ensure the care needed by the 30 million patients with #RareDiseases in the EU.”

📺 @CarolinaDarias ➡️ El Gobierno de España está comprometido con el desarrollo de la Red Asistencial y de Investigación 🇪🇺 que permita asegurar la atención que precisan los 30 millones de pacientes con #EnfermedadesRaras de la UE

🔗 https://t.co/kJWZGhsVYi#ECRD #ECRD2022 pic.twitter.com/vkhNYNyULM

— Ministerio de Sanidad (@sanidadgob) June 27, 2022

Credit: Twitter @sanidadgob

The Minister of Health highlighted the progress being made within the framework of the European Union to respond to the needs of people with rare diseases, with the creation, among others, of care and research infrastructures, such as the European Data Space.

A new network resource “of great value for expanding rare disease research networks and innovation in their treatment”, said Carolina Darias, who also highlighted the State Register of Rare Diseases, “one of the first examples of population surveillance systems that we have today”.

Spain currently has 110 centres, services and reference units (CSUR) of the National Health System participating in the 24 existing European reference networks.

Darias also spoke on the new Clinical Management IT Platform, which will allow greater integration with European reference networks and will make it easier for patients with rare diseases to access care resources thanks to Telecare.

“We will ensure that it is the information that travels and reaches them without the limitations of distance,” emphasised Carolina Darias.

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