Guilford Retiree Launches National Autoimmune Disease Data Hub

When Aaron Abend and his wife Shelley Orenstein retired to Guilford in 2014, starting and growing a national 501(c)(3) nonprofit organization wasn’t necessarily in their plans. However, right around that time, Abend’s mother was diagnosed with Sjögren’s disease, a chronic autoimmune disorder with very little data or research available.

This lack of data led Abend to start the Autoimmune Registry, a nonprofit hub for data and statistics on over 100 autoimmune diseases. As the founder of Boston-based medical informatics company Recombinant Data, he knew he could put his entrepreneurial and professional background to good use and make a real difference for other families like his that were dealing with an autoimmune diagnosis.

We spoke with Abend about his organization and its work, his involvement in the local community and why Guilford has been the perfect home for both him and the Autoimmune Registry.

Answers have been edited for clarity and length.

Patch: You lived and worked in Boston until shortly after your company, Recombinant Data, was acquired by Deloitte in 2012. What brought you to Guilford for retirement?

Abend: We arrived in Guilford 10 years ago. Shelley is originally from Mystic, and after raising our kids and our business in the Boston area, we had decided to move back to the Connecticut coast.

Patch: The Autoimmune Registry is a national organization, but how has it benefited from being based in the Guilford area?

Abend: Our local connections with researchers at Yale and with members of BioCT have great promise and could help create a national resource for millions of people suffering from autoimmune diseases. When my mother was diagnosed with Sjögren’s disease, I realized that my skills could make a difference to this community.

Patch: Is there any other work you do in the local community or the public health sector that is particularly meaningful to you?

Abend: My appointment to the Yale Institutional Review Board and my role as Advisor for the NIH All of Us program are two roles I am very proud of. I am passionate about the use of data to improve public health and both of these roles, plus my work on the Registry, are a satisfying outlet for my energy.

Patch: What other Guilford-area community events or organizations are you involved in?

Abend: Shelley and are always happy to attend events run by other folks, like the Guilford Keeping Society. I am also affiliated with Sachem's Head Yacht Club, Guilford Yacht Club and BioCT.

Patch: What's one thing you’d like others to know about the Autoimmune Registry and how it can help when they or a loved one receives an autoimmune disease diagnosis?

Abend: Our organization is new and relatively unknown. We are trying to raise awareness of our work among researchers, for whom we recruit participants at no charge, and for those with any autoimmune disease, who can find ways to participate in research and clinical trials at our website.

Patch: What do you love most about living in Guilford?

Abend: Guilford is an unusually diverse and open community. My wife and I feel very much at home here.

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