EURORDIS Rare Diseases Europe: Open letter – ECRD partner organisations call on the European Commission for a new European strategy on rare diseases
EURORDIS, alongside 57 partner organisations of the European Conference on Rare Diseases and Orphan Products 2022, co-signed a letter to call on the European Commission to take forward the conclusions of the conference for a European Action Plan on Rare Diseases.
58 organisations – representing patient organisations, learned societies, ERN coordinating centres, health and research groups and initiatives, and industry umbrella groups – signed up to reiterate the conclusions of the Conference.
“Dear Commissioner Kyriakides,
“On behalf of the organisers and partners of the 11th European Conference on Rare Diseases and Orphan Products (ECRD), we would like to thank you for your contribution to this key event for the rare disease community. We appreciated your reassurance that “access to knowledge, diagnosis and treatment for rare disease patients will remain central to EU policy”.
“However, the question remains: how can we ensure the interconnectedness and synergy of the different legislative and non-legislative initiatives you mentioned, across different directorates, without a strategy in place that would bring the existing actions on rare diseases under a common EU umbrella, steered by the same measurable goals?
“Over the five days of the European Conference on Rare Diseases, 850 stakeholders gathered to discuss exactly how this rare disease policy should be put into action in Europe to work towards meaningful goals, aligned with the SDGs, for people living with a rare disease. These goals were the themes of the conference: to improve health and well-being, to reduce inequalities and to foster innovation.
“At the conference, it was clear: the rare disease community needs a coordinated, cross-border and cross-sector European action plan on rare diseases. This call, reiterated by this letter, comes from all stakeholders: from patient advocates, clinical and research groups, industry umbrella groups, to Members of the European Parliament and Member States. The 30 million Europeans living with a rare disease at the European level can no longer wait for “accidental progress”, but require success by design. ”