This is the 13th year I have celebrated Rare Disease Day, but it never gets old. Each year brings a yearning for advancements in access to existing treatments and the development and availability of new treatments and cures for all living with rare diseases. As the rare disease community shares every year, taken together, rare … Read more
Since 2005, Congenital Hyperinsulinism International has been sharing the patient experience to advance the scientific understanding of congenital hyperinsulinism (HI). We have shared the patient story on our website, at meetings, and on social media with story after story of what it is like to live with the condition. As our focus on awareness has … Read more
Our 2017 Grant Recipient, Diva De León, MD, MSCE, is Raring To Go for CHI! Are you? Read about the 2017 Congenital Hyperinsulinism Research Project funded by our Raring to Go for CHI Million Dollar Bike Ride team!
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
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 … Read more