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Česká asociace pro vzácná onemocnění z.s.

ČAVO

Posláním České asociace pro vzácná onemocnění (ČAVO) je sdružovat organizace pacientů se vzácnými onemocněními i jednotlivé pacienty, zastupovat jejich zájmy a posilovat povědomí o specifické problematice vzácných onemocnění mezi odborníky ve zdravotnictví, představiteli státních i mezinárodních institucí a veřejnosti.

Lobbying Activity

Response to EU’s next long-term budget (MFF) – EU funding for competitiveness

6 Nov 2025

On behalf of the Board of Rare Diseases Czech Republic, a patient national alliance I plea for inclusion of funding of rare diseases in the EU's next long-term budget (MFF). Together with the Czech Ministry of Health and RD experts we have issued a Call to Action during the EU Council Czech Presidency in 2022 which was supported by 22 our of 27 member states (see attachment). This call clearly states all the areas which need EU support. Specifically for the already existing and crucial European Reference Network for rare diseases which was launched by the EC in 2017. Presently over 1000 HCP are working intensely under this network comprising of 24 therapeutical areas, caring, curing and sharing expertise and information so that about 30 million people living with over 7000 different diagnoses in the EU can have access to the best possible care across EU. This absolutely phenomenal idea which was initiated by the patient community is growing and helping many people living with a rare disease and their families. This network needs proper coordination and significant financial support by EU otherwise it will not thrive, and patients will not be treated. While RDs are addressed in many areas and ongoing projects on EU level, the initiatives are happening in silos and are not coordinated. Therefore, we urge for the European Union strategy on rare diseases and an action plan including adequate funding. Only then can we efficiently provide more integrated, systemic and uniform approach for national actions, bridging gaps and addressing remaining unmet needs and inequalities.
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