The Voice of Rare Disease
Patients in Europe
RARE DISEASES INTERNATIONAL
Rare Diseases International
Rare Diseases International (RDI) brings together national and regional rare disease patient organisations from around the world as well as international rare disease-specific federations, to create a global network of rare disease patients and families.
RDI‘s mission statement is to be a strong common voice on behalf of the people living with a rare disease around the world.
- Ongoing & Planned Actions
- Application Documents to download
As a result of RDI, people living with a rare disease worldwide and their families will experience increased public health services and support.
- To promote rare diseases as an international public health and research priority through public awareness and policy-making
- To represent its members and people living with rare diseases at large, in international institutions and forums
- To enhance the capacities of its members through information, exchange, networking, mutual support and potentially joint actions
RDI is a EURORDIS initiative, in partnership with National Alliances and patient groups around the world with whom EURORDIS has signed partnership agreements (Memorandums of Understanding) that include the establishment of RDI.
In March 2012, the EURORDIS Board of Directors adopted the orientation to create an informal network “Rare Diseases International” to expand the movement of rare diseases internationally, provide mutual support between patient organisations and be able to speak with one voice.
RDI was also a clear expectation at ICORD Tokyo 2012, where participants shared a strong sense that it was time to take action at the international level.
In 2013, in consultation with international partners such as the Canadian Organization for Rare Disorders (CORD) and the International Alliance of Patients' Organizations (IAPO), EURORDIS developed a survey to determine the level of interest of rare disease patient organisations in international affairs. Sixty-four respondents from 37 countries around the world were overwhelmingly in favour of the creation of a RDI initiative with 98% replying that they would be interested in joining.
The results of this international survey will be used to draft a “Joint Declaration: Rare Diseases as an International Public Health Priority” which will encapsulate the main advocacy messages of the network.
Ongoing & Planned Actions
- Active participation in Rare Disease Day
- Organise other specific international awareness campaigns
- Adoption and promotion of the Joint Declaration: Rare Diseases as an International Public Health Priority
- Advocate for rare diseases in international forums and multilateral institutions, such as the United Nations (UN), the Economic and Social Council (ECOSOC), the World Health Organization (WHO), and the Organisation for Economic Co-operation and Development (OECD)
- Participate in surveys and position papers to shape rare disease policy
Information & Networking
- Dedicated website and online discussion group
- Annual meeting
- Regional networking
- Exchange & Internship Programme
Research & Partnerships
- Coordination and participation in the International Rare Disease Research Consortium (IRDiRC)
- Partnerships and close liaison with Orphanet, International Alliance of Patients' Organizations (IAPO), International Conference on Rare Diseases & Orphan Drugs (ICORD), International Federation of Pharmaceutical Manufacturers & Associations (IFPMA), International Federation of Human Genetics Societies (IFHGS)
Why become a member of RDI?
- Join a community of Rare Disease Alliances across the world
- Develop and advocate for common positions
- Share experience and information internationally on a dedicated online platform
- Be represented at key international institutions
- Participate in the annual RDI meeting
- Be listed on the RDI website with a direct link to your website
- Be a privileged Rare Disease Day participant
What is required to become a member of RDI?
- To fulfil eligibility criteria
- To contribute & get involved in preliminary actions of information exchange
- To be listed on RDI website and communication documents
- To contribute, review & sign up to policy documents
- To take part in Rare Disease Day
- To be active in our actions
- To sign a “Mutual understanding” and fill out an application form
Membership Application Documents to Download
- Rare Diseases International Membership Information
- Membership Application & Mutual Understanding
- Rare Diseases International Common Goals
- Joint declaration « Rare Diseases: An International Public Health Priority »
- Press release (15 October, 2015): Major rare disease stakeholders announce new collaboration to streamline efforts at ICORD 2015, Mexico City
If you have questions or would like to know more about Rare Diseases International, please contact:
Senior Manager Rare Diseases International
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