NIH/NIDDK March 27, 2018 BT1D is not a distinct disease

Reiter, Amy (NIH/NIDDK) [E] <>

Mar 27, 2018

Dear Dr. Sorge,


I hope you and your daughter are well. The NIH’s Office of Genetic and Rare Diseases (GARD) forwarded your email to NIDDK, as we are the institute with primary responsibility for diabetes research.


As we’ve stated in past correspondence, the NIH – under which the GARD site operates – does not classify diseases nor have we endorsed brittle diabetes as a distinct disease. We have not changed our position. When we realized that the Brittle Diabetes Foundation was interpreting language on the GARD website as an NIH endorsement, we made changes to provide clarification. The World Health Organization (WHO) classifies “brittle diabetes” under its type 1 diabetes category. Information on the GARD page is consistent with this classification and scientific evidence.


The NIH remains committed to research to improve the management of diabetes and reduce glycemic lability. As you know too well, through no personal fault or lack of effort, some people with type 1 diabetes are unable to achieve stable blood glucose levels despite expert care. This unstable type 1 diabetes is, as you said, disruptive to daily life. But we hope this will not always be the case.


You may be heartened to know of results that came out last week in Diabetes Care from the NIH-funded Clinical Islet Transplantation Consortium (CIT). The study found that quality of life for people with type 1 diabetes who had frequent severe hypoglycemia improved consistently and dramatically following transplantation of insulin-producing pancreatic islets. However, this type of transplantation carries risks, and is not meant for most people with type 1 diabetes. You can read more about this research in this NIH news release:, or the paper itself,


Through NIH-funded research like the CIT, we hope findings will help those people avoid hypoglycemia and the fears and concerns associated with hypoglycemia. Information about this Consortium and other ongoing research is now available on the GARD page. The page will be updated with the new results shortly, and later as findings are available.


The NIH mission is to conduct and fund biomedical research to help people like your daughter. Your correspondence serves as a reminder of why this mission is so important.


I wish you and yours good health.





Amy F. Reiter, M.S. 
Office of Communications & Public Liaison 
National Institute of Diabetes and 
Digestive and Kidney Diseases (NIDDK), NIH

NIH . . . Turning Discovery Into Health®



From: Manny Sorge [
Sent: Tuesday, February 13, 2018 8:12 AM
Subject: Brittle Diabetes


Dear Ms. Knorr,


I am writing as the father of a daughter diagnosed with Brittle Type 1 Diabetes after a near death prolonged hospital stay for DKA in 2012. Having revisited your Brittle Diabetes website, I was surprised to see major shifts in GARDS description relegating Brittle Diabetes to a a mere term to describe hard to control type 1. Its original position was that of a rare disease that was disruptive to the daily life of those diagnosed with it. I have been searching the latest medical literature but have been unable to find any research papers to justify such a change in position. Your organization does such good work in answering peoples questions about rare diseases, I was wondering if you could provide me the literature references upon which this change in position was based. Thank you.