The Voice of Rare Disease
Patients in Europe
2017: Looking forward as EURORDIS celebrates 20 years
2017 marks the 20th anniversary of EURORDIS-Rare Diseases Europe.
20 years of achievements
The rare disease community, including all rare disease patient organisations and their partners, can be deservedly proud of its achievements over the last 20 years.
The landscape has changed drastically during this time. We have gone from near ignorance to the recognition of rare diseases as a public health priority in Europe. EU law now incentivises companies to develop orphan medicines. European expertise and innovative technologies that can potentially benefit people living with a rare disease have been developed. Most EU Member States now have national rare disease strategies and specialised centres of care. Rare disease research is stronger and recognised for its excellence.
The rare disease patient community is bigger, better connected and highly skilled with great leaders at its helm. Its spirit is collaborative across very different diseases, countries and stakeholders in Europe. Patients are now being taken seriously and listened to by policy makers, researchers and companies. Patient centricity has been the buzz term of the past decade.
We move forward with these changes. They are just the beginning. The needs of patients and families are huge and the community is calling for more action, now. We want to be ambitious, visionary. We will continue to always put patients first.
To encapsulate our vision for the next 10 to 20 years, EURORDIS is pleased to announce an updated vision for our organisation to enable “better lives and cures for people living with a rare disease” and an adjusted mission statement to “work across borders and diseases to improve the lives of people living with a rare disease”. This vision and mission reflect the progress that has been made over the last 20 years, but also our attitude to the challenges that lie ahead.
We have translated this into a new identity - we have changed our name from the European Organisation for Rare Diseases (EURORDIS) to EURORDIS-Rare Diseases Europe and have a brand new logo (download our new logo and style guide). Officially recognising our name to include Rare Diseases Europe, in use for several years now, is a further step to strengthen the identity of the rare disease movement, uniting with fellow national alliances around Europe (for example, Rare Diseases Denmark, Rare Diseases Hungary and Rare Diseases Sweden), as well as internationally with other patients groups like Rare Diseases International.
We now look to the future with great energy and drive. Building on our collective expertise from experience and shared values, together we will continue to tackle the new challenges that lie ahead.
Patient engagement will be the buzz term of the next decade; patient engagement in research, in healthcare services, in medical and social care and in the lifecycle of medicinal products.
We strive to create the transformational change that rare disease patients and their families need by:
- Increasing awareness of rare diseases among a larger public and key stakeholders through Rare Disease Day and other initiatives;
- Establishing rare diseases as a public health priority in the face of new challenges. We must act with authenticity and determination to promote bold strategies to ensure that rare diseases are continuously recognised as a public health priority across Europe and around the world. This will ensure that the huge unmet needs of rare disease patients are addressed, and that all patients benefit from equal access to the new opportunities stemming from scientific, technological and organisational innovation (for example, the new European Reference Networks) in a sustainable and fair way.
- Supporting patient advocacy based on patients’ knowledge generated through the Rare Barometer survey programme so that the patient perspective is brought to the forefront during research, therapy development and policy making. EURORDIS will continue to act as a knowledge broker providing and encouraging the flow of rare disease patients’ perspectives within and outside the rare disease community;
- Engaging patients at all relevant levels to ensure the effective implementation of new policies and legislation relevant to patients’ needs:
- Research (from basic research to ethics, and from research infrastructures to dissemination of research results);
- Therapy development (all along the critical points of the medicinal product lifecycle); and
- Healthcare pathways (from national centres of expertise to European Reference Networks, from patient registries to clinical trials, from best practices in diagnosis and patient cross-border mobility to accessing best care, and finally from patient therapeutic education to healthcare professional education).
- Empowering patient advocates and patient organisations by:
- Informing them through relevant tools such as eurordis.org and EURORDIS webinars.
- Connecting them through networks such as RareConnect, the Council of National alliances and the Council of European Federations. We will support the growth of the European Patient Advocacy Groups and will also champion matchmaking tools that connect patients with researchers and clinicians. Patients will become better connected to the medical, scientific and policy communities.
- Building the capacity of patient advocates through workshops and trainings including the EURORDIS Summer School so that they are prepared to engage in research, therapy development, policy making and more. We will also continue to build the capacities of stakeholders including clinicians, researchers, companies and policy makers and help to better understand the perspectives of those living with a rare disease.
The challenges ahead are no small feat. But the rare disease community is not easily deterred. This is why we have come so far in the last 20 years.
We look forward to the next 20 years with pride, courage and hope for how we can enable better lives and cures for people living with a rare disease.
Rare but strong together.
Yann Le Cam,
Chief Executive Officer
President of the Board of Officers
Eva Bearryman, Communications Manager, EURORDIS