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 [...]
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Research that could lead to better treatment of a severe form of congenital hyperinsulinism is described in the current ahead of print edition of the online journal, Diabetes. The research is groundbreaking because it involves correcting the cellular defect that is the cause of the disorder. CHI is proud of the fact that two members [...]
116 people ordered Congenital Hyperinsulinism International T-shirts to wear today, Rare Disease Day, 2011. The fabulous “Be my sugar.” T-shirts, which are available at http://www.cafepress.com/Congenitalhyperins, were sported in many places around world, in English, French, and Spanish, from Australia, to Canada, to the U.S. We are looking forward to hearing all of your stories about [...]
New Jersey Artist, Wendy Letven, has designed a line of t-shirts to help us raise awareness of HI. The shirts are amazing and can be purchased through Cafepress: http://www.cafepress.com/Congenitalhyperins. They are available in various styles and designs, and in sizes ranging from onesies (they are so cute!) to extra, extra large. It is our hope [...]
This week sugar was in the news again. The price of sugar reached a new high on Thursday due to weather conditions in Australia that could have an effect on the supply of sugar worldwide. More relevant to us, news media sources reported on promising results in research studies on the artificial pancreas. This phase [...]
Put down whatever it is you are doing and pick up the latest copy of the New Yorker, December 20-27, 2010. If you’re anything like me you’ll read the article entitled Mother Courage by John Colapinto and you’ll be moved. If I wanted to advocate for a better life for people born with congenital hyperinsulinism [...]
Dear CHI Friends, I am writing to tell you about an excellent opportunity to spread awareness about HI and to share your opinions about the importance of information sharing for taking care of yourself or a child with HI. The attached electronic survey which is being conducted by NORD, the National Organization of Rare Diseases, [...]
Isabel Calderón, a member of the CHI Board of Directors from Canada, attended the Annual Congress of the Canadian Organization for Rare Disorders (CORD) held in Ottawa on October 1-2, 2010. A full two days of presentations and workshops made up the agenda. About 120 representatives from different Canadian rare disorder associations and individual patients [...]
Carriers of a genetic mutation caused by the ABCC8 gene which can result in children with congenital hyperinsulinism (HI), can now be tested at fertility clinics in many locations around the country through a simple saliva test. The test, made by a California company, Counsyl, actually screens for 100 different rare disorders including HI. An [...]
Qualitest Pharmaceuticals in Huntsville, Alabama, USA has announced a recall of 250 million insulin syringes. If the needle becomes detached from the syringe during use, it can become stuck in the insulin vial, push back into the syringe, or remain in the skin after an injection, the company said. Consumers who have these products should [...]
