Global Partnerships

Rare Diseases Europe (EURORDIS) 

EURORDIS is a voluntary organization that is dedicated to improving the quality of life of all those affected by rare disorders. Its purpose is to encourage research and development of promising therapeutic options for the treatment of rare diseases; to insure the best possible health care throughout Europe and the European Union for those affected by rare disorders; and to improve the overall quality of life of those affected by rare diseases. Additional goals include the stimulation of coordinated research efforts at the European level to increase the knowledge of rare disorders, their causes, and new and effective treatments; the provision of a European platform to a wide variety of national patient organizations to coordinate their actions at the European level; and the provision of a patient interest-driven mediator between all the various European structures and institutions that are involved in public health responses to the needs of persons with rare disorders. Learn more about EURORDIS 

Rare Disease Day 

As part of our partnership with Rare Diseases Europe (EURODIS), NORD acts as the national sponsor for the global Rare Disease Day campaign. We work with our partners internationally to recognize, celebrate and generate attention for rare diseases on this annual day of awareness, held each year on the last day of February. Learn more about Rare Disease Day in the U.S. 

Rare Diseases International (RDI) 

As a global alliance of patient organisations, RDI brings together national and regional rare disease groups and federations to ensure greater equity for all persons living with a rare disease and their families across the global. RDI advocates for rare diseases as an international policy priority, represents persons living with rare disease and their families at international institutions and on global platforms, and supports the empowerment of its members through knowledge exchange, networking, mutual understandings of support and joint actions.  Learn more about RDI. 

International Rare Disease Research Consortium (IRDiRC) 

The International Rare Diseases Research Consortium (IRDiRC) unites national and international governmental and non-profit funding bodies, companies (including pharmaceutical and biotech enterprises), umbrella patient advocacy organizations, and scientific researchers to promote international collaboration and advance rare diseases research worldwide. Importantly, the coverage of the Consortium is global and involves stakeholders from Africa, Asia, Australia, North America, and Europe. Learn more about IRDiRC 

Global Commission to End the Diagnostic Odyssey 

We are a multi-disciplinary group of experts with the creativity, technological expertise and commitment required to make a major difference in the lives of millions of children and their families. We have developed an actionable roadmap to guide the rare disease field in shortening the multi-year journey that patients endure to receive an accurate diagnosis, which can be the key to a longer, healthier life. Learn more about the Global Commission 

Undiagnosed Diseases Network International 

the Undiagnosed Diseases Network International (UDNI) was established in 2014, with the major aims of providing diagnoses to patients, implementing additional diagnostic tools, and fostering research on novel diseases, their mechanisms, and their pathways. The UDNI involves centres with internationally recognized expertise, and its scientific resources and know-how aim to fill the knowledge gaps that impede diagnosis, in particularly for ultra-rare diseases. Learn more about the UDNI