Rare Diseases International

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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.

Vision

As a result of RDI, people living with a rare disease worldwide and their families will experience increased public health services and support.

Objectives

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.

Background

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

Awareness

Active participation in Rare Disease Day
Organise other specific international awareness campaigns

Advocacy

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)