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 included BRITTLE DIABETES on its' GARD list of RARE DISEASES which at the time answered the age old question 'Is Brittle Type 1 Diabetes real or just a myth'?
NOTE: Whether or not BT1D is a separate and distinct form of T1D, depends on who you ask. A significant clinical difference has been established between BT1D and stable T1D. Both diagnostic tests and BT1D therapies have been proposed because the type 1 treatment program applied to brittle patients has failed. In BDFs' opinion, there is enough definitive clinical research data to presently allow for delineating 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. Then why does the director of the Diabetes Research Institute suggest that there are some 70,000 Brittle type 1 diabetics in the US who should be availing themselves of islet cell transplantation which he sees as a potential cure?
If you have any questions BDF hasn’t answered – you can ask the NIH!!!!! GO TO: