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Dalhousie researcher and Hematology professor Dr. Luke Chen has dedicated his career to tackling some of the most complex and misunderstood conditions in medicine: rare inflammatory diseases.

His recent research, published in the New England Journal of Medicine, recounts the successful use of AI-assisted drug discovery (artificial intelligence and machine learning algorithms that accelerate and enhance the process of finding and developing treatments for new and existing conditions), marking a groundbreaking step forward – not only in redefining how these diseases are treated, but also in proving how vital collaboration is to medical advancement.

Now, he is working to launch a promising new initiative: the Coastal Rare Inflammatory Diseases Program, a collaboration between Dalhousie University and the University of British Columbia (UBC).

A native Nova Scotian, Dr. Chen returned home to Dalhousie in 2023 after years of caring for patients in British Columbia with rare blood diseases such as Castleman disease, Hemophagocytic Lymphohistiocytosis, and other complex inflammatory conditions. This new program will provide support to physicians across Canada treating rare inflammatory diseases, conduct innovative research, and establish a Fellowship at Dalhousie for specialized training in rare inflammatory conditions.

A new hope: How AI and collaboration led to a breakthrough

Rare diseases often leave patients and their doctors in the dark, struggling to find effective treatments due to how challenging they are to recognize in the first place and how toxic or invasive many of their treatments can be. One such disease is idiopathic multicentric Castleman disease with TAFRO syndrome (iMCD-TAFRO), an ultra-rare and often fatal condition.

Dr. Chen’s recent publication, in collaboration with Dr. David Fajgenbaum of the University of Pennsylvania and the non-profit organization Every Cure, describes the successful use of AI-driven predictive modeling to identify a surprising treatment: tumor necrosis factor (TNF) inhibitors, a class of drugs not previously considered for iMCD-TAFRO. The result? A patient who had exhausted all conventional treatment options – including a bone-marrow transplant – achieved full remission. He has now been in remission for two years.

“This was really the most remarkable case I’ve encountered in my career,” says Dr. Chen. “We went through a roller coaster ride for several years with many different types of therapies. When his disease came back even after the transplant, we were preparing for the worst.”

“Having exhausted all options,” he says, “I reached out to Dr. David Faigenbaum at the University of Pennsylvania, who is the world expert in this condition.” From there, Dr. Faigenbaum’s research group identified the drug adalimumab as the most promising option, and as Dr. Chen attests, “it made all the difference.”

Dr. Chen attributes this success to mutual collaboration and a willingness to take a chance. “It is humbling to work with global experts like him,” he says, “but we have to be bold and creative if we want to make progress. It is important to work with the very best.”

With UBC and Dalhousie joining forces, Dr. Chen hopes to build on this success and facilitate more connections like these to offer new hope to other patients facing rare inflammatory diseases.

Dalhousie partners with UBC to launch the Coastal Rare Inflammatory Diseases Program

The Coastal Rare Inflammatory Diseases Program is designed to bridge a critical gap in healthcare by ensuring that no patient or physician faces the challenge of a rare inflammatory disease alone. The initiative focuses on connecting clinicians with expert support, accelerating research through cutting-edge tools like AI, and training future specialists through a new Fellowship program based at Dalhousie in partnership with UBC and the University of Pennsylvania.

Rare diseases are, by definition, uncommon. But the struggles that come with them –misdiagnoses, treatment delays, and isolation – are far too common. This program is about overcoming those barriers and fostering a network of support and expertise.

“We live in a big country, but we don’t necessarily need to have an expert in every rare disease in every city,” Dr. Chen explains. “What we need is a way to be able to reach out and help each other – to share our knowledge and experiences. Learning about interesting cases in different parts of the country is an important way to drive research.”

Opportunities for medical trainees and researchers

Dalhousie and UBC students, residents, and researchers will have the opportunity to engage with the program in meaningful ways, both for themselves and the patients who will one day benefit from their work.

“Almost all of my publications feature students or residents as first authors,” Dr. Chen notes. “In the program, they will learn how to conduct research and contribute to the medical literature while also training to be the next generation of physicians who will care for patients with rare diseases.”

Looking ahead: The future of rare disease care

As rare disease diagnosis and treatment continue to evolve, programs like the Coastal Rare Inflammatory Diseases Program will play a critical role in shaping the future of medicine. With its foundation in collaboration, research, and education, the initiative aims to improve care for some of the most underserved patients in the healthcare system.

For patients and physicians alike, Dr. Chen’s message is clear: You are not alone.

“It is crucial to have different layers of support,” he says. “With this program, we hope to empower patients with rare inflammatory blood diseases, their caregivers, and physicians with the resources, expertise, and collaboration needed to ensure faster diagnoses, better treatment options, and a stronger support network.”