The Voice of Rare Disease
Patients in Europe
Rare diseases: New steps in EU collaboration to improve citizens’ lives
In the face of current Euroscepticism, the area of rare diseases is one that proves cross-border, European collaboration is essential to improve the lives of EU citizens.
European collaboration on rare diseases results in policies that bring high added value to patients and their families, and in turn has a direct positive impact on their daily lives.
Never is this truer than in the case of the new European Reference Networks (ERNs); by creating cross-border virtual networks of doctors, rare disease knowledge and expertise will travel, rather than the patient.
European Reference Networks: cross-border is better
The 24 ERNs bring together nearly 1,000 healthcare providers across Europe to tackle complex or rare medical conditions that require highly specialised treatment and a concentration of knowledge and resources.
Through the ERNs, healthcare professionals will gain new knowledge, resulting in improved clinical excellence, the development of best practice guidelines, and better diagnosis, healthcare and treatment outcomes for patients.
Proving the value of such EU cooperation, the European Ombudsman recently presented its inaugural overall Award for Good Administration to the European Commission’s Directorate for Health and Food Safety (DG SANTE), as nominated by EURORDIS. The Award recognises DG SANTE’s work on EU initiatives, such as the European Reference Networks, which directly improve the lives of the 30 million people living with a rare disease across Europe.
Maltese Presidency of the EU Council: rare diseases high on the agenda
The Maltese Presidency of the EU Council has put rare diseases high on its agenda. Rare diseases were the focus of discussions at the Presidency’s recent events:
Informal meeting of EU health ministers
At an informal meeting of health ministers from EU Member States, ministers discussed the need for structured cross-border collaboration between EU Member States. Watch the press conference to see Chris Fearne, Minister for Health in Malta, explain conclusions of the meeting that focused on rare diseases.
Joseph Muscat, Prime Minister of Malta, chose to focus his speech on the importance of rare diseases as an area in which the EU provides added value to citizens and on which Member States can collaborate more.
Discussions at the informal meeting concentrated on the new ERNs, while the development of recent regional groupings and proposals for joint procurement of medicines were encouraged (and are supported by EURORDIS). In addition, Chris Fearne called for more transparency in medicines pricing.
Ministers for health also agreed on the need to better structure post-graduate medical education, especially in order to develop the highly specialised expertise needed for rare diseases.
EURORDIS is also the first patient organisation to be invited to host an event under the Presidency of the EU Council. The event “Integrating Research and Healthcare for Rare Diseases: A structured cooperation with high community added value” was held in parallel with the informal meeting and hosted by EURORDIS and other partners. It offered the opportunity to explore synergies within and across the rare disease research and healthcare communities.
Conference on the Development & Access of Medicines for Rare Diseases
The Maltese Presidency and the Malta Medicines Authority also hosted a Conference on the Development and Access of Medicines for Rare Diseases in collaboration with EURORDIS and other partners.
Participants at the Conference (including a delegation of European patient representatives) recognised the need for structured cooperation between Member States to improve rare disease patients’ access to better diagnosis, care, therapies and innovative technologies.
EURORDIS Declaration on Rare Diseases
In line with this Conference, EURORDIS launched a declaration calling for improved mechanisms of structured voluntary cooperation across EU Member States to address the unmet needs of people living with a rare disease.
The Declaration focuses on three key areas:
- Structured cooperation in healthcare for rare diseases to ensure the success of ERNs and their full integration into national healthcare systems, working towards patient-centred healthcare pathways.
- Structured cooperation in research for rare diseases to ensure longer-lasting and integrated support for rare disease research, which is connected between the EU and most Member States, and realised through the ERNs.
- Structured cooperation for improved access for patients to therapies and innovative technologies to consolidate current initiatives aimed at improving access. This call for cooperation to improve access to therapies follows the recent publication of a EURORDIS reflection paper “Breaking the Access Deadlock to Leave No One Behind”.
Eva Bearryman, Communications Manager, EURORDIS
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