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Press Release on Rare Disease Day: EUCOPE is collaborating to develop solutions for rare disease patients

28. February 2017 in News Press Releases

Brussels, 28 February – On the occasion of Rare Disease Day 2017[1], EUCOPE reiterates its willingness to work in collaboration with all stakeholders in the rare disease community to develop solutions to the challenges still faced by patients.

Today is a reminder of how incentives set out in the EU Regulation on Orphan Medicinal Products[2] (OMPs) have proved successful in encouraging the development of new therapies for rare diseases from eight before the adoption of the Regulation to 128 in 2016. Despite this excellent progress and a commitment at European level, patients with rare diseases still do not have timely access to the life-saving treatments that they need.

Accessibility varies between EU Member States mainly due to different pricing and reimbursement systems across Europe.

“For this to improve, we believe it is crucial to continue the collaborative efforts of all stakeholders and we welcome the outcomes of the EURORDIS Symposium that took place in Brussels last week”, said Dr Alexander Natz, EUCOPE Secretary General. “This is clearly an area where the EU can add significant value for patients and we will continue to strive for improved access across the EU”.

EUCOPE has been working closely with other stakeholders through its Working Group on OMPs to identify solutions to the challenges faced by rare disease patients. EUCOPE is a member of the European multi-stakeholder expert group, ORPH-VAL, comprising patient representatives, physicians, academics, HTA practitioners, politicians and pharmaceutical industry representatives, that has developed a set of common principles to improve the consistency of decision-making for OMPs and to balance the needs of innovators and payers.


[2] Regulation (EC) No 141/2000 of the European Parliament and the Council of 16 December 1999 on orphan medicinal products (