NORD and Amgen Launch Learning Collaborative to Improve Rare Disease Diagnosis and Care

New Initiative Will Bring Together NORD® Rare Disease Centers of Excellence to Address Challenges in Two Rare Autoimmune Diseases and Develop Approaches that Could Benefit Other Rare Disease Communities

WASHINGTON, Oct. 27, 2026 /PRNewswire/ -- The National Organization for Rare Disorders (NORD®) today announced a major collaboration with Amgen to launch a Learning Collaborative through NORD's Rare Disease Centers of Excellence Network to reduce the time to diagnosis for rare disease, a significant gap in care. Supported by a sponsorship investment from Amgen, the 14-month pilot will bring together five to eight participating institutions to address persistent challenges in diagnosing and caring for people living with rare autoimmune diseases.

The collaborative will initially focus on IgG4-Related Disease (IgG4-RD) and Thyroid Eye Disease (TED), two conditions that can be difficult to recognize and require care across multiple medical specialties.

Through the pilot, clinicians from participating NORD Rare Disease Centers of Excellence will work with patients, caregivers and disease-specific advocacy organizations to examine where diagnosis, referrals, treatment decisions and care coordination break down. Drawing on clinical experience, patient insights and structured reviews of care pathways, the collaborative will identify opportunities for improvement and develop practical resources for clinicians.

The initiative is designed to generate two types of learning: disease-specific approaches to improve recognition and care pathways for IgG4-RD and TED, and broader insights into diagnostic delays, specialist referrals and care coordination that may be applicable to other rare diseases facing similar challenges. Participating centers will share findings and refine approaches that could be adapted across institutions.

"When NORD established its Rare Disease Centers of Excellence network, our vision was to bring together the expertise and resources of leading medical institutions to tackle challenges that no single institution could solve alone," said Pam Gavin, President and Chief Executive Officer of NORD. "Amgen is committed to rare diseases and recognized the potential of this network and stepped forward to help put that vision into action. By working across institutions and alongside patients and clinicians, we have an opportunity to address challenges specific to these two diseases while developing approaches that could benefit many more rare disease communities."

The Learning Collaborative also advances the goals of SPAARK (Strengthening Partnerships to Advance Autoimmune Rare Disease Knowledge), an Amgen-led alliance of 10 advocacy and professional organizations, including NORD, working toward reducing time to rare autoimmune disease diagnosis by 50% by 2036.

"As a caregiver to my husband, Andy, who lives with IgG4-related disease, I know firsthand how overwhelming it can be to navigate a complex disease and find the right answers and care," said Kat Provencher, Director of Patient Advocacy, IgG4ward! Foundation. "For families like ours and countless others, the challenges don't end with a diagnosis. Coordinating care across specialists and understanding the path forward can be just as difficult. What gives me hope about this collaboration is that patients and caregivers will have a voice in identifying where the system falls short and helping shape solutions that could make the journey easier for others." 

"For too many people living with rare autoimmune diseases, the path to diagnosis and appropriate care is long and often filled with uncertainty," said Paul Burton, M.D., Ph.D., senior vice president and chief medical officer at Amgen. "We believe patients deserve answers sooner. Through our collaboration with NORD and the members of SPAARK, we are bringing together diverse perspectives and expertise to address barriers to timely diagnosis, accelerate progress and help more people get the care and support they need."

Established in 2021, NORD's Rare Disease Centers of Excellence network includes 49 designated centers spanning more than 170 affiliated medical and research institutions. The network connects specialized clinical expertise and institutional resources to address gaps in rare disease diagnosis and care. The Learning Collaborative builds on that foundation by creating a structured opportunity for institutions to learn from one another and develop practical approaches to shared challenges.

NORD will maintain independent scientific oversight of the collaborative. Educational resources will be developed to support evidence-based, patient-centered care without promoting any specific medication or treatment approach.

About the National Organization for Rare Disorders

Founded in 1983, the National Organization for Rare Disorders (NORD®) is a leading independent, nonpartisan nonprofit dedicated to improving the health and lives of more than 30 million Americans with rare diseases. With more than 350 disease-specific member patient organizations and 49 designated Rare Disease Centers of Excellence spanning more than 170 affiliated institutions, NORD advances care, research, education and advocacy. 

SOURCE National Organization for Rare Disorders (NORD®)