Autoimmune Registry Celebrates 10 Years of Impact & Announces New Executive Director
A Decade in the Making
Ten years ago, the Autoimmune Registry set out to build something that had never existed: a comprehensive, cross-disease registry for all autoimmune conditions, modeled on what the National Cancer Registry has long done for cancer. As we mark this anniversary, the case for that mission has never been stronger.
Why a Cross-Disease Registry?
Autoimmune disease affects at least 15.5 million Americans (the majority of them women) across more than 100 confirmed conditions. Yet research has long been organized disease by disease, creating a fundamental blind spot: autoimmune diseases don't respect diagnostic borders.
In 2022, the National Academy of Sciences identified the same gaps the Registry had been working to fill since its 2016 founding: limited epidemiologic data on US incidence and prevalence. In 2024, ARI published its first landmark study showing prevalence and comorbidity of 105 autoimmune conditions.
What Ten Years of Data Has Revealed
Within the Registry, autoimmune thyroiditis, rheumatoid arthritis, and Sjögren's syndrome are the top 3 conditions. Furthermore, 43% of patients report multiple diagnoses, often separated by years of diagnostic uncertainty. Cross-disease analysis reveals which comorbidity pairs cluster together, an insight that disease-specific registries cannot produce and one that could dramatically improve diagnostic accuracy.
If the Registry's first decade was about building the dataset, the second is about unlocking it. Machine learning models trained on cross-disease data could identify which patients with one autoimmune diagnosis are at elevated risk of developing a second, supporting early screening. Analysis of patient histories can surface undiagnosed conditions, reducing the time to diagnosis. And by linking patient-reported flare data with environmental datasets, AI can begin to decode autoimmune triggers at population scale.
A New Chapter: Welcoming Mette Dyhrberg
As we mark this anniversary, we are pleased to announce that Mette Dyhrberg will become the Registry's new Chief Executive Officer, as founder Aaron Abend transitions into the role of Founding Director.
Aaron's vision established the Registry’s cross-disease infrastructure. Mette brings a rare combination of lived experience, scientific conviction, and entrepreneurial track record that maps onto the Registry's next chapter with remarkable precision. Her own autoimmune journey, beginning at 14 with psoriasis and expanding over decades to include six concurrent diagnoses, sits at the heart of everything the Registry studies. She founded Mymee, an award-winning digital health platform completing over 1,000 personalized trials for autoimmune non-responders, recognized by the American College of Rheumatology, the Galien Foundation, and Fast Company.
Under Mette's leadership, the Registry is positioned to accelerate on every dimension that the next decade demands and, above all, to maintain a growing dataset that continues to give patients a meaningful role in the science that will ultimately help them.
Thank You
To every patient who has contributed their data, every researcher who has engaged with our work, every advocate and partner who has helped build the case for cross-disease, patient-powered research: this anniversary belongs to you.
The body of evidence that will ultimately improve diagnosis, reduce delay, and unlock new treatments for autoimmune disease is being built one data point at a time. We are grateful to be doing that work alongside you.