The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases.
EURORDIS’ mission is:
- To build a strong pan-European community of patient organisations and people living with rare diseases;
- To be their voice at the European level; and – directly or indirectly – to fight against the impact of rare diseases on their lives.

To this end, EURORDIS undertakes activities on behalf of its members, notably in favour of:
- Empowering rare disease patient groups;
- Advocating rare diseases as a public health issue;
- Raising public rare disease awareness, and also that of national and international institutions;
- Improving access to information, treatment, care, and support for people living with rare diseases;
- Encouraging good practices in relation to these;
- Promoting scientific and clinical rare disease research;
- Developing rare disease treatments and orphan drugs;
- Improving quality of life through patient support, social, welfare, and educational services.



EURORDIS is a patient-driven alliance of Patient Organisations (POs) and individuals active in the field of rare diseases (RD). It represents the voice of an estimated 29 million citizens in the EU.

EURORDIS mission is to build a strong pan-European community of POs and People Living With RD (PLWRD), to be their voice at the European level and to fight against the impact of RD on their lives.

To this end, EURORDIS undertakes activities on behalf of its members, notably in favour of:

• Empowering RD patient groups
• Advocating RD as a public health priority
• Raising public awareness on RD (national and international levels)
• Improving access to information, treatment, care and support for PLWRD, including support to families
• Improving quality of life
• Encouraging good practices in relation to these issues
• Promoting scientific and clinical research on RD
• Developing treatments and drugs for people with RD

EURORDIS plays a pivotal role in the definition and implementation of the EU strategy on RD (EC Communication, Dec.2008 and Council Recommendations, June 2009).


Our mission is to improve the lives of porphyria patients by improving the diagnosis and treatment of these rare conditions. EPNET has been funded by the EU Commission (DG SANCO, PHEA programme). The objective is to provide an effective network of specialist porphyria centres in each country. EPNET contains 28 EU specialist centres that work together to develop an up-to-date approach to the management of patients and families with porphyria that conforms to uniform standards. EPNET focuses on: provision of information to patients (in their own languages) and healthcare professionals (HCPs); collection of information on safety of drugs; use of external quality assessment to develop quality standards for diagnosis and clinical advice; a web-based registry to collect data about the porphyrias to inform clinical practice and healthcare planning. Progress is communicated to partners through regular meetings and reports. Information on the porphyrias and drug selection is made available to patients, public health authorities and HCP’s at www.porphyria-europe.org; www.drugs-porphyria.org.


EURORDIS is a patient-driven alliance of Patient Organisations(POs) and individuals active in the field of rare diseases (RD). It represents the voice of an estimated 29 million citizens in the EU.

EURORDIS mission is to build a strong pan-European community of Patient Organisations and people living with RD, to be their voice at the European level and to fight against the impact of RD on their lives.

To this end, EURORDIS undertakes activities on behalf of its members:

• Empowering RD patient groups
• Advocating RD as a public health priority
• Raising public awareness on RD
• Improving access to information, treatment, care and support for people living with RD
• Improving quality of life
• Encouraging good practices in relation to these issues
• Promoting scientific and clinical research on RD
• Developing treatments and drugs for people with RD

EURORDIS plays a pivotal role in the implementation of the EU strategy on RD (EC Communication, Dec.2008 and Council Recommendations, June 2009), in the EU Committee of Experts on RD and in the elaboration of National Plans or Strategies on RD.


EuroWilsoN (EW) mission is to improve quality of care and access to multi-disciplinary expertise for EU patients with Wilson’s disease (WD). From 2004-2008 EW (LSHM CT2004 503430), has achieved:

- An active patient registry
- Interaction between clinicians and an expert validation committee
- External molecular quality network
- A DVD in the neurological evaluation
- Transferring knowledge by contribution to the public consultation papers and participation in policy conferences
- organisation of a European patient meeting during the Eurordis conference

EW’s goals include maintaining and enhancing this network; the French centre for WD serves as a network model. The network will include all stakeholders involved in patient care: medical, scientific para-medical, EU authorities and patients’ associations. EW will:

- Promote exchange between participants
- Provide up-to-date disease information on its website (eurowilson.org) and Orphanet
- Develop and publish evidence based clinical guidelines
- Enhance the registry to provide epidemiological data, outcome indicators, country comparisons and to facilitate collaborative research and public health projects
- Support patients and patient associations in the EU

