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:

- 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 PLWRD
- Improving quality of life
- Encouraging good practices in relation to these issues
- Promoting scientific and clinical research on RD
- Promoting the development of treatments and drugs for people with RD

EURORDIS plays a pivotal role in the implementation of the EU strategy on RD (EC Communication and Council Recommendations), in the EU Committee of Experts on RD and in the elaboration of National Plans or Strategies on RD.
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Health Action International (HAI) Europe is a non-profit, independent, European network of consumer groups, public interest NGOs, healthcare providers, academics and individuals. HAI`s mission and goals follow the overarching global work programme set every five years. HAI Europe devises plans and strategies to inform medicines` policy in Europe and acts as a regional coordinating centre.

HAI`s mission is:
- To increase access to Essential Medicines: Ensuring that medicines meeting priority healthcare needs are available, accessible and affordable to all;

- To improve the Rational Use of Medicines: Ensuring that all licensed medicines meet real medical needs, have therapeutic advantages, are acceptably safe, offer value for money and are appropriately prescribed, in tailored doses, for an adequate time at the lowest cost to citizens and their community;

- To promote the participation of citizens in medicines policy: Encouraging and supporting the participation of patients and consumers in decisions that will affect their health and well-being, whilst advocating for the highest levels of transparency, independence and accountability in all aspects of medicines policy.

HAI Europe monitors and encourages EU policy-making around these three thematic priorities. HAI Europe works by implementing innovative methodologies that generate key data, develop and publish key publications and commentary as well as promote knowledge exchange on the impact of medicines policy on public health. The paucity of coherent medicines policies in Europe has driven HAI`s unique focus over the last 30 years and continues to be at the centre of HAI`s research, advocacy, capacity building and expertise, and as a result, has established HAI`s reputation as an authority on pharmaceutical policy issues.

Vision: Poverty and social injustice represent the greatest barriers to sustainable health and development and HAI works for a just and equitable society where people can participate in decisions affecting their health and well being, including the allocation of resources.

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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 approximately 30 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:

- 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 PLWRD
- Improving quality of life
- Networking activities
- Capacity building
- Encouraging good practices in relation to these issues
- Promoting scientific and clinical research on RD
- Promoting the development of treatments and drugs for people living with RD

EURORDIS plays a pivotal role in the implementation of the EU strategy on RD: participation to the EU Committee of Experts on RD (EUCERD) and related road map,elaboration of National Plans or Strategies on RD, European Commission Communication and Council Recommendations in the field of rare diseases, Cross Border Health Care (CBHC) and patient`s mobility, as well as in the implementation of EU Regulations on Orphan Drugs, Paediatrics and Advanced Therapies Medicinal Products (ATMPs) through participation in the EMA Scientific Committees.
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Health Action International (HAI) Europe is a non-profit, independent, European network of consumer groups, public interest NGOs, healthcare providers, academics and individuals. HAI`s mission and goals follow an overarching global work programme set every five years. HAI Europe devises plans and strategies to inform medicines` policy in Europe and acts as a regional coordinating centre.

HAI`s mission is:

- To increase access to essential medicines: Ensuring that medicines meeting priority healthcare needs are available, accessible and affordable to all;

- To improve the rational use of medicines: Ensuring that all licensed medicines meet real medical needs, have therapeutic advantages, are acceptably safe, offer value for money and are appropriately prescribed, in tailored doses, for an adequate time at the lowest cost to citizens and their community;

- To promote the participation of citizens in medicines policy: Encouraging and supporting the participation of patients and consumers in decisions that will affect their health and well-being, whilst advocating for the highest levels of transparency, independence and accountability in all aspects of medicines policy.

HAI Europe monitors and encourages EU policy-making around these three thematic priorities. HAI Europe works by implementing innovative methodologies that generate key data, develop and publish key publications and commentary as well as promote knowledge exchange on the impact of medicines policy on public health. The paucity of coherent medicines policies in Europe has driven HAI`s unique focus over the last 30 years and continues to be at the centre of HAI`s research, advocacy, capacity building and expertise, and as a result, has established HAI`s reputation as an authority on pharmaceutical policy issues.

HAI`s vision is:

Poverty and social injustice represent the greatest barriers to sustainable health and development and HAI works for a just and equitable society where people can participate in decisions affecting their health and well being, including the allocation of resources.

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The objectives of the European Conference on Rare Diseases & Orphan Products are:

- To disseminate the most up-to-date health information related to the rare disease environment to all relevant stakeholders (patients and patients’ representatives, academics, health care professionals, industry and policy makers);

- To demonstrate the importance of EU actions in the field of rare diseases and review progress made to date;

- To elaborate strategies and mechanisms for developing further exchange of information between stakeholders: people living with rare diseases, volunteers, health professionals, policy makers, researchers and industry at national and EU levels;

- To exchange knowledge and best practices on all relevant health issues related to the rare disease environment;

- To sustain efforts for rare disease policies at both the European and the national level;

- To stimulate dialogue on policies for rare diseases in some of the Member States having recently joined the EU;

- To present specific, achievable objectives at both European and national levels in order to reduce health inequalities for rare disease patients.


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