Open letter of the rare disease community to the European Commission for a new European strategy on rare diseases
EURORDIS along with 57 partner organisations representing patient organisations, patient advocates, clinical and research groups, ERN coordinators and industry umbrella groups, have published an open letter to the European Commission calling for a new European strategy on rare diseases. This call follows the conclusions drawn by the stakeholders at the 11th edition of the European Conference on Rare Diseases (ECRD) held from the 27 of June to the 1 July 22, where they expressed the need for a more coordinated strategy on rare diseases at the European level. This letter reiterates this call and asks that all legislative and non-legislative actions should be federated under a new Commission Communication and Council Recommendation on rare diseases, revising the framework from 2009.
The open letter signed by international rare disease stakeholders also focuses on the importance of a strong European Health Data Space that includes a specific rare disease codification standard and emphasis the need for regulatory systems, including the Orphan Medicinal Products and Paediatric Regulation, the General Pharmaceutical Legislation and the implementation of the HTA regulation, positions the EU as a global leader in medicine development to address the unmet needs of the rare disease community. The rare disease community also calls for the integrations of the ERNs into national healthcare system and for increased cross-border but also cross-sector working with strong links between research, data and healthcare.
Ultimately, the open letter calls for the design of a European Action Plan for rare diseases in order to improve the life of European patients and to strive towards the objectives of the EU4Health and Horizon Europe. A coordinated strategy means working towards better diagnosis and treatment for persons living with a rare disease, notably through enhanced data, research, treatment, care and inclusion and enshrining rights to accessing quality care, education and employment.
During the ECRD 2022, Jakub Dvoracek, Deputy Minister of Health, stated that the Czech Republic, now presiding the EU, will organise a conference on rare diseases in October 2022, to further discuss a coordinated strategy on rare diseases at the EU-level. The conference will address the keys aspects of the new framework, including, early diagnosis, access to treatment, the revision of paediatric legislations, and the role of the ERNs.
It is hoped that this conference as well as the commitment of the Czech Republic Presidency of the EU on rare diseases will mark a further step towards the design of Europe’s Action Plan on Rare Diseases.
