EU commits to cooperation to fight rare diseases

The European Commissioner for Health, Stella Kyriakides, highlighted this Wednesday on World Health Day Rare Diseases the need to work jointly between all the countries of the European Union (EU) to guarantee care for patients suffering from these pathologies, which affect more than 36 million throughout the EU.

In her statement, the Health Commissioner stated that, “at the national level, resources and experience are often scarce”hence “the added value of EU action” result “indisputable”.

“We need strong EU cooperation to ensure that all (patients) receive timely diagnosis, as well as affordable treatment and care,” Kyriakides said in a statement.

According to data from the European Commission, today there are more than 6,000 rare diseases registered in the EU; While some only affect several patients, others can reach up to 250,000 and, furthermore, close to 80% of them are of genetic origin and the 70% They already present symptoms in childhood.

Kyriakides highlighted that the reform of EU pharmaceutical legislation – presented in April by the Commission – also aims to dedicate part of pharmaceutical investment to the most neglected diseases, as well as guarantee that innovation reaches all patients regardless of in which Member State they live.

The commissioner stated that the EU “has given priority” to this area of ​​health, where “We have become pioneers in the fight against rare diseases.”

The Commission highlighted the work of the 24 European Reference Networks (ERN) responsible for uniting doctors who care for patients with rare diseases and involving more than 1,600 specialized centers in 382 hospitals throughout the EU and Norway, and in which more than 77 million euros will be invested for the period 2023-2027.

Furthermore, in order to consolidate these networks, the EU is financing a new joint action “with more than 18 million euros over the next three years”which will also include Ukraine.

The commissioner also highlighted the financial support through the Horizon Europe program, which includes 100 million euros for the design of diagnostics and treatments within the framework of the new European Association on Rare Diseases.