COACH, the Collaborative Alliance on Congenital Hyperinsulinism, has created a website that is now in English in addition to German. Last month I wrote about Dr. Winfried Barthlen, The Surgeon from Griefswald, Germany who has conducted research on and treated patients with atypical segmental mosaic congenital hyperinsulinism. You can now read all about his approach … Read more
Earlier this year I had the opportunity to attend the Genetic Diseases of Children Conference in New York City sponsored by the New York State Department of Health. What was new and different about this meeting was the mix of people attending: researchers, academics, PATIENT ADVOCATES, government officials, and drug company representatives were all invited … Read more
A surgeon in Germany, Dr. Winfried Barthlen, has successfully treated patients with diffuse congenital hyperinsulinism (HI) by removing only 40% of the pancreas rather than 95% or more, which has been the standard for some time. By removing only 40 percent of the pancreas, Dr. Barthlen is hopeful that his patients will not develop diabetes. … Read more
While attending the APEG (Australian Paediatric Endocrine Group) meeting in Australia, CHI board member, Margaret Maher, learned that some HI patients in Australia were being refused a standard subsidy for diabetics for the purchase of blood sugar level (BSL) testing supplies. On behalf of the denied patients, Margaret entered into discussions with governmental agencies responsible … Read more
SAVE THE DATE Congenital Hyperinsulinism Family Conference March 17-18, 2012 Philadelphia, Pennsylvania Congenital Hyperinsulinism International (CHI), in conjunction with the Children’s Hospital of Philadelphia (CHOP), invites you to attend the fourth Congenital Hyperinsulinism Family Conference. Conference attendees will learn about recent advances in the diagnosis and treatment of congenital hyperinsulinism (HI) from experts in the … Read more