Through the efforts of BDF, on July 3, 2013 the NIH, after months of researching the literature, agreed with BDF and for the very first time concluded that BRITTLE DIABETES is a RARE DISEASE answering the age old question 'Is Brittle Type 1 Diabetes real or just a myth'?
The National Institute of Health (NIH) Office of Rare Diseases Research (ORDR)
has set up a BT1D informational website.
NOTE: Whether or not BT1D is a separate and distinct form of T1D remains under investigation by BDF. Despite the significant differences between BT1D and stable T1D there is not enough definitive clinical research data to presently allow for delineation of these two disease states as separate entities.
The NIH listed Brittle Diabetes Foundation (BDF) as the only supporting organization in the USA for this rare disease. This was a true statement for four years. On March 13, 2017 BDF and all links to our site were erased by the NIH from their informational website. This included the removal of other resource links to non profits serving the needs of patients and families devastated by this rare disease. In its place, the NIH substituted the American Diabetes Association and NIDDK links , two organizations which have never supported or acknowledged the existence of Brittle Diabetes.
According to NIH, BD affects between 4,200 to less than 9,000 people in the USA.
If you have any questions BDF hasn’t answered – you can ask the NIH!!!!! GO TO:
NOTE: Prior to July 2013 not a single health organization in the world recognized the existence of Brittle Type 1 Diabetes. This included the National Institute of Health (NIH), the National Organization of Rare Diseases (NORD), the Juvenile Diabetes Research Foundation (JDRF), the International Diabetes Federation (IDF), the American Diabetes Association (ADA) and the World Health Organization (WHO)
Despite 80 years of medical research and publications and millions of dollars spent on clinical trials to alleviate Brittle Diabetes none of these health organizations listed Brittle Diabetes as a disease entity in its own right. That has now changed.
After several meetings and discussions, JDRF posted an announcement of support for the position taken by the NIH and BDF in the BLOG section of their website March 2016.
The Professional Practice Committee of the ADA has agreed to address the issue and hopefully will offer a statement in the 2017 edition of Standards of Care to be published January 2017.
After an 8 month wait for a response, The ADA never formally acknowledged the existence of BT1D or BDF by responding to a formal proposal submitted by BDF for the reclassification of Brittle Diabetes. Instead they simply make no mention of this diseases existence in their 2017 Standards of Medical Care for Diabetes.
The World Health Organizations 2016 edition of Medical Codes lists Brittle Diabetes Mellitus under the banner of Type 1 Diabetes Mellitus.
Although BDF has yet to meet the criteria for organizational membership in NORD (National Organization of Rare Diseases) they do list Brittle Type 1 Diabetes on their site.