Global Partnerships National Organization For Rare Disorders

We work with national, international and regional alliances around the world as part of our mission to improve the health and well-being of patients living with rare diseases. In addition to the global initiatives listed below, NORD Membership is available for rare disease organizations that serve patients at the national or pan-regional level that meet our qualifications. Learn more about membership. As part of our partnership with Rare Diseases Europe (EURORDIS), 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.

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... 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... 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... Importantly, the coverage of the Consortium is global and involves stakeholders from Africa, Asia, Australia, North America, and Europe.

Learn more about IRDiRC Robert Wood Johnson University Hospital (RWJUH) and Rutgers Robert Wood Johnson Medical School’s (RWJMS) Rare Disease Center of Excellence will be led by Sabahat Bokhari, MD, FACC, FASNC, (right) as Director, and Naveena Yanamala,... Dr. Bokhari serves as Professor in the Division of Cardiovascular Disease and Hypertension at RWJMS and Director of Advanced Cardiac Imaging and Director of the Cardiac Amyloidosis Center at RWJUH. Dr. Yanamala is Associate Professor of Medicine at RWJMS, Section Chief of Clinical Research, Director of the Center for Innovation at RWJUH and RWJMS and is a recognized leader in data science and AI innovation.

(New Brunswick, NJ) — Robert Wood Johnson University Hospital (RWJUH), an RWJBarnabas Health facility, in partnership with Rutgers Robert Wood Johnson Medical School (RWJMS), has been designated a National Rare Disease Center of Excellence... RWJUH is the first hospital in the state to receive this designation making New Jersey one of just 26 states in the U.S. to host such a Center of Excellence. RWJUH and RWJMS were selected for this designation based on the strength and impact of their Cardiac Amyloidosis Center, which was recently named an International Center of Excellence by the International Society of Amyloidosis... RWJUH is part of the RWJBarnabas Health Heart and Vascular network of care. The Center offers comprehensive, multidisciplinary care across cardiology, neurology, hematology, nephrology, pathology, and bone marrow transplantation, allowing for precise diagnosis and personalized treatment plans.

“This prestigious designation highlights our academic medical center’s deep commitment to delivering world-class, multidisciplinary care and advancing research that holds the promise of breakthroughs for patients with rare and complex conditions,” says Bill Arnold,... “Patients can be confident that a dedicated team of clinicians and researchers is with them every step of the way.” Launched in 2021, NORD’s Rare Disease Centers of Excellence Program is the first national network dedicated to diagnosing, treating, and researching the full spectrum of rare diseases. Robert Wood Johnson University Hospital (RWJUH), an RWJBarnabas Health facility, in partnership with Rutgers Robert Wood Johnson Medical School (RWJMS), has been designated a National Rare Disease Center of Excellence by the National Organization... RWJUH is the first hospital in the state to receive this designation making New Jersey one of just 26 states to host such a Center of Excellence. RWJUH and RWJMS were selected for this designation based on the strength and impact of their Cardiac Amyloidosis Center, which was recently named an International Center of Excellence by the International Society of Amyloidosis.

RWJUH is part of the RWJBarnabas Health Heart and Vascular network of care. The center offers multidisciplinary care in cardiology, neurology, hematology, nephrology, pathology and bone marrow transplantation, allowing for precise diagnosis and personalized treatment plans. “This prestigious designation highlights our academic medical center’s deep commitment to delivering world-class, multidisciplinary care and advancing research that holds the promise of breakthroughs for patients with rare and complex conditions,” says Bill Arnold,... “Patients can be confident that a dedicated team of clinicians and researchers is with them every step of the way.” Rare diseases collectively impact hundreds of millions worldwide, yet the genetic causes of many remain unknown or poorly understood. Model organisms (MOs) - such as yeast, fly, zebrafish and mouse - provide powerful experimental systems for functional validation of candidate genes and variants, elucidation of gene function and disease mechanisms, and identification of...

However, gaps persist between clinical gene discovery and MO-based research. The Canadian Rare Diseases: Models and Mechanisms (RDMM) Network was established in 2014 to address this gap by linking clinicians with MO researchers through a scientist registry and peer-reviewed funding process. Over the past decade, the RDMM Network has funded over 160 collaborative projects, enabled insights into numerous rare conditions, and led to sustained partnerships and external funding. The RDMM Registry software has been adopted internationally, forming a network of interoperable registries that enable cross-border collaborations and expand access to MO expertise worldwide. Going forward, the Canadian RDMM Network remains committed to sharing its tools, processes and experience to help establish new RDMM-like networks worldwide and invites the global research community to join efforts to accelerate rare... Keywords: Functional insights; Gene discovery; International collaboration; Model organisms; Rare genetic diseases.

© 2025. Published by The Company of Biologists. Competing interests The authors declare no competing or financial interests. Supporting rare disease organizations to transform lives and meet community needs. At Amgen, we know our responsibility goes beyond our patient communities to the communities where we live and work. It is why we are committed to organizations that share our common purpose: to transform and better the lives of those who need it most.

As an active partner in the rare disease community, we provide support to many organizations that deliver a wide range of crucial programs and services. These rare disease organizations promote the needs and priorities of people living with rare diseases and their families and provide various types of support and assistance. To learn more about the #RAREis program, download this resource. The National Organization for Rare Disorders (NORD) is committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and service. They provide many resources for people living with rare diseases, their families and other advocates.

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