Patient Voices Finally in the Mix

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

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New Approach to Surgery for Some Diffuse Patients

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

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BSL TESTING AND PUMP SUPPLIES AVAILABLE TO HI PATIENTS IN AUSTRALIA AT SUBSIDIZED PRICES

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

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SAVE THE DATE: HI FAMILY CONFERENCE MARCH 17-18, 2012

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

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The CHI Endocrine Society Dinner in Boston

Last Saturday, June 4, Congenital Hyperinsulinism International (CHI) held a dinner meeting in Boston at the Seaport Hotel bringing together families living with congenital hyperinsulinism (HI), leading world experts in the field of HI and other endocrine fields, and representatives from pharmaceutical and genetic testing companies. The meeting was generously sponsored by Teva Pharmaceuticals and … Read more

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