Areas of expertise & Fields of activity:
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Economic and Social:
Children
Disabled Persons
Family
Human Rights
Information
Population
Science and Technology
Social Development
Sustainable Development
Women/gender Equality
Youth
Gender Issues and Advancement of Women:
Human rights of women
Women and health
Population:
Morbidity and mortality
Social Development:
Aging
Cooperative
Disabled persons
Employment
Social policy
Youth
Sustainable Development:
Biotechnology
Capacity-building
Demographics
Education
Gender equality
Health
Indicators
Information for decision-making and participation
Integrated decision-making
International cooperation for an enabling environment
Partnerships
Poverty
Science
Sustainable development in a globalizing world
Technology
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| Geographic scope: |
Regional
Europe
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| Country of activity: |
Russian Federation
Belgium
Algeria
United States of America
Benin
Japan
Slovenia
Argentina
Armenia
Georgia
South Africa
Italy
Uruguay
Cyprus
North Macedonia
Bulgaria
Ireland
Morocco
Burkina Faso
Germany
Iceland
Hungary
Iran (Islamic Republic of)
Czechia
Denmark
Guatemala
Portugal
Finland
Belarus
Luxembourg
Austria
Estonia
Switzerland
Canada
Colombia
Romania
Slovakia
Türkiye
Ukraine
China
Norway
Serbia
Latvia
Malaysia
United Kingdom of Great Britain and Northern Ireland
Nepal
Poland
Croatia
Singapore
Brazil
Australia
India
Lebanon
Kazakhstan
Greece
Netherlands
France
New Zealand
Mexico
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| Millennium Development Goals: |
Combat HIV/AIDS, malaria and other diseases
Reduce child mortality
Improve maternal health
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| Mission statement: |
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| Year established: |
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| Year of registration: |
1997 |
| Organizational structure: |
EURORDIS has 710 members in 63 countries representing over 4000 rare diseases. EURORDIS has the potential to reach out to more than 1800 patient organisations across Europe, in particular through its Membership, the EU Networks of National Alliances and European disease-specific Federations. To become members, patient organisations must fill in an application form and provide by-laws, activity and financial reports, composition of Board. These documents are evaluated against a set of criteria to assess the nature of the association as patient-driven, its financial independence and the reality of their activities. Membership decisions are prepared by the staff and taken by the Board. A process of regular membership reassessment which checks that members still meet the membership criteria was approved in 2013 and implemented as of 2014. Full Members vote at the General Assembly (GA) and present candidates to the Board. They are all rare disease patient organisation and take part in strategic and political decisions. Associate Members do not vote. Structure and responsibilities are defined in the EURORDIS statutes, adopted in 2003 and revised in 2016. EURORDIS is managed by a Board of Directors (BoD) of 12 members, elected amongst its full members. That Board meets in two-day meetings every 4 months, overseeing the strategy and actions. The Board of Officers (BoO) consults at least 4 times/year, overseeing implementation and management. Good decision-making process and transparency are ensured through agreed agenda, table of documents, minutes, tracking table of actions and decisions. In order to further enhance its good practice in governance, EURORDIS adopted a set of policies to reflect its patient-centred nature in its strategy and activities, public statements and Board governance practices. This ensures a democratic policy development and control, and constitutes a safeguard against pressure from any individual, institution, group or stakeholder with a specific interest, financial or other. Democratic control and external audit: a) Management: multiannual strategy (revised and adopted in 2013), annual work programme including action plan, budget, organisational charts and annual activity reports are presented at the GA and voted on by members; b) Finance: annual budget, annual financial statements and Treasurer Report, as well as the Report by the auditing firm Deloitte are presented at the GA and voted on by members; For maximum transparency, all the above-mentioned documents are made publicly available on the EURORDIS website. |
| Number and type of members: |
EURORDIS has 710 members in 63 countries representing over 4000 rare diseases. The Association is a membership organisation composed of full and associate members. Further membership categories can be decided upon and added by the Board of Directors. Only full members have voting rights. Only European non-profit registered patient organisations can become or remain full members of EURORDIS and must comply with the membership criteria as decided by the Board of Director. Patients Organisations who do not comply with all membership criteria can apply for associate membership. To obtain full or associated membership, it is necessary to apply and to be approved by the Board of Directors. Each full member designates one person to represent it at the General Assembly. Associate and other categories of members do not hold a vote. Only those full members who are up-to-date with their membership fee payments can vote. The annual membership fees are set by the General Assembly. Detailed membership criteria are maintained and updated by the Board of Directors and are included in the by-laws. |
| Affiliation with NGO networks: |
International Alliance of Patients’ Organizations-IAPO (Special Consultative Status since 2014), Social Platform-Europe, European Patients' Forum (EPF), RDI (Rare Diseases International) |
| Funding structure: |
Membership fees or dues
Grants from Governments
Funds from other Non-Governmental Organizations
Foreign and international grants
Fundraising campaigns
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