EURORDIS is a patient-driven alliance of Patient Organisations(POs) and individuals active in the field of rare diseases (RDs). It represents the voice of approximately 30 million citizens in the EU.

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

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

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

EURORDIS plays a pivotal role in:
- the implementation of the EU strategy on RDs(Commission Communication and Council Recommendations), through its participation in the EU Committee of Experts on RD (EUCERD), as well as in the elaboration and monitoring of National Plans/Strategies on RDs
- the shaping and implementation of:
the specific EU health policies and legislations impacting on the RD field (EU Directive Cross Border Healthcare) through development of European Reference Networks for RD, as well as participation in the EUnetHTA Stakeholders Forum;
the EU Regulations on Medicines (Orphan Medicinal Products, Paediatrics, Advanced Therapies) through participation in the EMA Scientific Committees which also serves at improving the EU framework for drug development, approval and access to address RD patients` needs
- the revision of EU legislation on Clinical Trials, Data Protection and Transparency.
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The mission of the SCPE network is to learn more about the cerebral palsies from surveillance of trends in prevalence rates, severity, associated impairments and secondary disabilities.
By using population-based surveys and registers across Europe the SCPE network aims to:
• promote harmonization and quality of definition and description of the cerebral palsies
• develop collaborative epidemiological and clinical research projects about the cerebral palsies, attracting young researchers to the field, in partnership with individuals with cerebral palsies and their carers
• disseminate knowledge about the cerebral palsies for individuals with cerebral palsies, health care professionals and key stakeholders, including via academic publications
• develop best practice in monitoring trends in the cerebral palsies
• raise standards of care equitably for all people with cerebral palsies through the life span and thus improve outcomes and quality of life for individuals with cerebral palsies and their carers


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The EUCERD (EU Committee of Experts on Rare Diseases) is mandated to assist the EC in formulating & implementing the Community`s activities in the RD field, to foster exchanges of relevant experience, policies & practices between the MS & stakeholders.

The general objective of this JA is to support this mandate.

Specifically this JA will address the following priority areas of the recommendation:
a. Enhancing visibility and recognition of RD;
b. Contributing to the development and dissemination of knowledge on RD, from specialized research, through to the support of the healthcare professionals and the empowerment of patients;
c. Contributing to improvements in access to quality services and care, from diagnosis, through to care and social support and innovative therapies.

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The rare diseases portal is designed to improve the services already provided by Orphanet to the public at large. A comprehensive set of information on rare diseases (RDs) will be accessible from a portal in six languages and will be fully accessible to visually and physically impaired users by developing all the Orphanet screens according to international norms in order to be classified AAA for the disabled. It will include a comprehensive encyclopaedia of rare diseases, written by experts and peer-reviewed, a directory of professional services
throughout 35 countries, including a directory of centres of reference in Europe, and a database of orphan drugs providing information on their stage of development and availability in the Member States.
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The general objective of this project is to set up a European network of treatment centres of rare bleeding disorders (RBDs), exploiting the potential of the existing database on RBDs called the Rare Bleeding Disorders Database (RBDD) by extending its proven organisational capacity and experience in collecting pertinent data.
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