What We Do
EURORDIS aims at improving the quality of life of people living with rare diseases in Europe through advocacy at the European level, support for research and drug development, networking patient groups, raising awareness and other actions designed to fight against the impact of rare diseases on the lives of patients and family.
Key issues affecting patients of Rare Diseases on which we actively work.
Sustaining Rare Diseases as an EU Public Health Priority
Rare diseases have gained recognition as a public health priority and as an area of unique European added-value for Community action. Since 1999, the European Union has taken m
Making Rare Diseases A Public Health Priority In All Member States
The Commission Communication and Council Recommendation on European Action in the Field of Rare Diseases have given momentum to the implementation of National Plans for Rare Dis
Rare Diseases: An International Public Health Priority
Patients and families affected by rare diseases live in all parts of the world. Yet vast disparities of access to information, diagnosis and support can be seen from count
Improving Access To Orphan Drugs
The EU Orphan Drugs Regulation has stimulated research and development of orphan medicinal products in the EU, but equitable and timely access to approved Orphan Dru
Improving Access To Quality Care
Rare disease patients have difficulties accessing quality care that is adapted to their needs. European networks of centres of expertise have been suggested as a way to improve
Promoting Cross-Border Healthcare And Patient Mobility
An increasing number of rare disease patients are seeking care in another Member State. A concerted European strategy is being developed to further facilitate the movement
Bridging Patients And Research
Rare disease patient organisations can be valuable partners in research projects. In addition to being the subjects of the research, patients play an important role by fun
Genetic Testing & Newborn Screening: Addressing The Issues
Eighty percent of rare diseases have a genetic origin. Genetic issues, such as pre-implantation genetic diagnosis, newborn screening and genetic testing are already in the Commi
EURORDIS represents patients within European government institutions and advocates for policies which address the needs of patients and their families. We consult our membership and other stakeholders extensively in developing each advocacy action.
Our advocacy activities
Today, more than half of new national policies, laws and regulations stem from EU policies, directives and regulations. Since Eurordis represents rare disease patients from all
EURORDIS advocating to improve patient access to orphan drugs in Europe
Rare disease patients do not have equitable and timely access to the approved orphan drugs they need.
Mobility of RD patients across health services in EU
Patient mobility across European borders is a reality for people living with rare diseases today.
The process for writing Eurordis' position papers
Position papers are an essential tool for rare disease patient advocacy at EU level. They express the viewpoint of rare disease patients as a whole and are disseminated to regul
Preimplantation Genetic Diagnosis and patient mobility
Preimplantation Genetic Diagnosis (PGD) - a technique of high interest to rare disease patients - offers an interesting case of patient mobility.
The Eurordis European Public Affairs Committee (EPAC)
The Eurordis European Public Affairs Committee (EPAC) was created in September 2004 to provide support to the advocacy activities of Eurordis. It is a permanent committee of Eur
Health Policy & Health Care Services
Promoting Rare Disease Health Policy Development
EURORDIS pushes for the adoption and actively supports the implementation of coherent and coordinated rare disease strategies at the European and national level. We organise the largest and most influential rare disease policy conference in Europe.
EUROPLAN: a joint action for National Strategies and Plans for Rare Diseases in all EU Member states
EUROPLAN is a three year project which began in April 2008. Its main goal is to develop recommendations on how to define a strategic plan for rare diseases.
Putting Rare Disease Patients At The Heart Of The Healthcare System
EURORDIS conducts surveys and manages projects that aim at giving patients a voice in the health care policy that affects them. Based on these, we propose adapted organisational models of healthcare and social services , namely Centres of Expertise and European Reference Networks, genetic testing and neonatal screening.
POLKA: Patients' Consensus on Preferred Policy Scenarii for Rare Disease
Strategies and plans for rare diseases are currently being developed by the European Union and many of its Member States. EURORDIS, the voice of all rare disease patients in Eur
European Network for Rare Paediatric Neurological Diseases (nEUroped)
Why are Centres of expertise and European Networks of Reference important? The new project European Network of Reference for Rare Paediatric Neurological Diseases (nEUroped) wil
Patient Empowerment can be fun!
EURORDIS is proposing a new consultation method that will give rare disease patients the opportunity to voice their opinion about issues that affect them.
European Centres of Reference
The concept of "Centre of Reference" and the definition of what constitutes a rare disease varies significantly from one Member state to another. The number of centres
Support Services To Patients
EURORDIS promotes the implementation of services adapted to the situation and special needs of people living with rare diseases. We facilitate the networking of Respite Care Services and Therapeutic Recreational Programmes in Europe, promote the sharing of good practices, and provide information on these services.
European network of respite care services for rare diseases
'Respite care is of great importance, both for the person living with a rare disease and for the whole family and the carers around that person,' says Katrine Fyhri.
EURORDIS puts patients at the heart of rare disease research and the development of treatments.
Shaping Research Policy
EURORDIS contributes to the promotion and maintenance of rare diseases as a priority in EU research policy and funding schemes.
Commission Conference on Rare Disease Research 07
The Commission wanted to raise awareness at the level of Member States and European Parliament on the needs of research on rare diseases...
Patient groups need access to RD research resources
It was a milestone in the empowerment of patient groups on the way to playing a greater role in the European research agenda.
European Workshop on Rare Disease Research
A European Workshop on Rare Disease Research organised by EURORDIS was held March 1st in Brussels.
Promoting Drug Development & Access To Treatments
EURORDIS intervenes in the orphan drug, advanced therapies and pediatric-use regulatory process and works with industry to speed up the development and availability of treatments.
We promote transparent and quality information on clinical trials and medicines for patients.
EURORDIS advocating to improve patient access to orphan drugs in Europe
Rare disease patients do not have equitable and timely access to the approved orphan drugs they need.
EURORDIS Round Table of Companies: Purpose & Aims
The Eurordis Round Table of Companies was created to establish a long-term educational relationship between Eurordis and those companies having an interest in orphan drugs, trea
ERTC Workshops
11th Workshop of the Eurordis Round Table of Companies: “Improving Access to Orphan Drugs for all Patients affected by Rare Diseases in Europe: EU Assessment of Clin
Consider Joining the Round Table: Why & How
Pharmaceutical companies interested in the challenging field of Rare Diseases are confronted with the very specific hurdles that lie in the path of product development for rare
Members of the Round Table of Companies
Companies interested in the challenging field of rare disease are invited to become members of the Eurordis Round Table of Companies.
Orphan drugs: The role played by Eurordis
Eurordis plays an important role in the orphan drug development process through its participation in the Committee for Orphan Medicinal Products (COMP) at the EMEA (European Med
The Committee for Orphan Medicinal Products (COMP)
The principal task of this committee is to examine applications for the designation of Orphan Medicinal Product.
Paediatric Committee (PDCO)
The PDCO is responsible for providing opinions on the development of medicines for use in children, in accordance with the legislation.
Committee for Advanced Therapies (CAT)
The main responsibility of the Committee for Advanced Therapies (CAT) is to prepare a draft opinion on each Advanced Therapy Medicinal Product (ATMP) application submitted to th
Patients’ and Consumers’ Working Party (PCWP)
The Patients' and Consumers' Working Party was created to provide recommendations to the EMEA and its human scientific committees on all matters of direct or indirect interest t
Supporting Clinical Research
Research advances in the field of rare diseases could not be possible without patient participation in clinical trials, registries and biobanks. EURORDIS has created and maintains the European network of DNA, Cell and Tissue Banks for Rare Diseases (EuroBioBank). We represent the needs of patients in European research networks and empower patients in clinical research activities.
European Network for Rare Paediatric Neurological Diseases (nEUroped)
Why are Centres of expertise and European Networks of Reference important? The new project European Network of Reference for Rare Paediatric Neurological Diseases (nEUroped) wil
TREAT-NMD: Accelerating treatments for neuromuscular diseases
The TREAT-NMD network of excellence was officially launched on 1 January 2007. It is a European initiative bringing together 21
Eurordis Charter for Clinical Trials in Rare Diseases
The Charter aims at improving the quality of clinical research in rare diseases and at enhancing a transparent and effective dialogue between sponsors and patient organisations.
EURORDIS brings the rare disease community together. There is an estimated 30 million people affected by rare diseases in Europe. Working together, we share news and information and spread it across Europe and beyond to raise awareness about rare diseases.
Community Building
EURORDIS seeks to empower rare disease patients by enabling them to share and learn from each other. We organize structures where the rare disease community can grow and thrive. We believe that our strength is in numbers and in acting together in a coordinated way.
A new Network for European Rare Disease Federations
Today 25 European rare-disease specific federations are members of EURORDIS, and more informal or emerging federations are currently involved in EURORDIS' activities. Their incr
Rare! Together: Promoting European disease-specific federations
Rare! Together encourages emerging networks to become well-structured disease-specific federations at the European level
The Council of National Alliances (CNA)
The CNA was established by Eurordis. This structure allows national representatives of rare diseases to work together on common European actions.
Informing & Raising Awareness
Positive change for people living with rare diseases cannot happen if decision-makers, health professionals, researchers and the general public are not aware of rare diseases and what they mean. EURORDIS uses its pivotal position in the rare disease community to inform, educate and raise awareness about rare diseases.
Our conferences & events
European Conference on Rare Diseases Annual Membership Meeting, Con
Rare Disease Day 2010: Coming up!
This year the rare disease community will drum up around the motto “Patients & Researchers: Partners for Life”.
Winners of the 2008 Photo Contest
With some 270 entries this year for our annual photo contest, the jury faced a very difficult task in choosing the winners.
Video contest winner - Rare Disease Day 2009
EURORDIS' first Video Contest attracted 49 entries to the Rare Disease Day website (www.rarediseaseday.org). People from all over th
Rare Disease Day
28 February 2009 marked the second annual Rare Disease Day. On and around this date hundreds of patient groups and their partners organised a variety of awareness-raising activi
2010 Photo & Video Contest
The Eurordis 2010 Photo & Video Contest is now officially open. Open to anyone having an interest in rare diseases, whether members of EURORDIS or not.
Preparing for Poland
Register now for the European Conference on Rare Diseases 2010 Krakow, which will take place from 13th to 15th May 2010
European Workshop on Rare Disease Research
A European Workshop on Rare Disease Research organised by EURORDIS was held March 1st in Brussels.
Information Services To Patients
EURORDIS promotes the implementation of services adapted to the situation and special needs of people living with rare diseases. We facilitate the networking of rare disease Help Lines across Europe and provide patient-friendly access to information through our web sites.
The European Network of Rare Disease Help Lines
The European Network of Rare Disease Help Lines was created in September 2006 by a core group of rare disease help lines led by Climb from
The European Network of Rare Disease Help Lines
EURORDIS is inviting all Rare Disease help lines in Europe to apply to join the European Network of Rare Disease Help Lines.
