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
Future EU regulation on advanced therapies
The European Commission released its latest proposal on a European Regulation on Advanced Therapies in November 2005.
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
European Network for Rare Paediatric Neurological Diseases (nEUroped)
Why are Centres of expertise and European Networks of Reference important? The new project nEUroped will give the answer.
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
Narcolepsy: a correct diagnosis for a normal life
Linda R. tells us about her daughter’s life with Narcolepsy, a rare disorder that causes excessive sleepiness and cataplexy
Play and Decide on your preferred rare disease policy scenario!
The Play Decide Games have taken off! Be inspired and play!
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.
Therapeutic Recreation Programmes for Rare Diseases
EURORDIS has been promoted and networked Rare Disease Therapeutic Recreation Programmes (TRPs) since 2007. The Rapsodyonline site lists existing services around Europe.
Respite Care Services for Rare Diseases
EURORDIS has been promoting and networking Rare Disease Respite Services since 2007. The Rapsodyonline site lists and maps existing services around Europe.
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
A milestone in the empowerment of patient groups on the way to playing a greater role in the European research agenda.
Why Rare Disease Research Matters
Advocating for increased and more targeted funding for research into rare diseases
Survey : Patient Groups in Research
309 patient groups responded to the EURORDIS Survey on the role and priorities of patient groups in rare disease research.
Building the Future Agenda of Rare Disease Research in Europe
Rare Disease Day European Workshop
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.
ERTC: Purpose and 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
On December 10, 2010 the 13th ERTC Workshop in Paris, France focuses on patients’ access to orphan drugs, pricing schemes and national measures in today's economic climate.
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
EURORDIS 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
Two EURORDIS representatives appointed to the CAT
The much-awaited Committee for Advanced Therapies (CAT) is now a reality. The creation of this scientific committee at the EMEA
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 nEUroped will give the answer.
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.
CAPOIRA: Increasing patient involvement in research activities
The Capacity Building for Patient Organisations in Research Activities project (CAPOIRA), funded by the EC, was set up to respond to the need to make informed choices.
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.
EURORDIS General Assembly 2010
EURORDIS General Assembly, May 13th, 15.00 - 18.00, Krakow, Poland.
EURORDIS-NORD Strategic Partnership agreement signed
Bringing European and US rare disease patient advocates closer together
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.
European Conference on Rare Diseases – ECRD 2010 Krakow
An unprecedented number of 600 participants attended the largest ever European Conference on Rare Diseases
Our conferences & events
European Conference on Rare Diseases Annual Membership Meeting, Con
Winners of the 2010 Photo & Video Contests
Winning video: Garret, a portrait of daily life with Epidermolysis Bullosa, by Andre J. Hermann. Winning photo: Twin sisters with Spinal Muscular Atrophy, by Ilona Brandt.
Rare Disease Day 2010
This year’s Rare Disease Day, on February 28th, drew more partners in more countries and better quality events than ever!
Patients and Researchers: Partners for Life!
EURORDIS Survey on role and priorities of patient groups in rare disease research in Europe
Video contest winner - Rare Disease Day 2009
EURORDIS' first Video Contest attracted 49 entries to the Rare Disease Day website. People from all over the world, representing a variety of rare diseases, 'told their story'
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.
Preparing for Poland
Register now for the European Conference on Rare Diseases 2010 Krakow, which will take place from 13th to 15th May 2010
International Rare Disease Day - 28 Feb
“Patients & Researchers: Partners for Life!” For this annual event hundreds of patient groups and their partners organise activities to raise awareness
ECRD 2010 Krakow: Momentum for rare diseases
An unprecedented number of participants attended the largest ever European Conference on Rare Diseases (ECRD), held in Krakow, Poland on May 14 & 15, 2010.
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.
Help Line Services for Rare Diseases
EURORDIS promotes, networks, trains and advocates on behalf of Rare Disease Help Line Services. The Rapsodyonline site lists and maps existing services around Europe.
CAPOIRA: Increasing patient involvement in research activities
The Capacity Building for Patient Organisations in Research Activities project (CAPOIRA), funded by the EC, was set up to respond to the need to make informed choices.
