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
If you had one extra day in a given year, how would you spend it? Last week there was just such a day, and along with 110 other people I attended a fantastic party: the Congenital Hyperinsulinism International (CHI) Very Special Cocktail Party in Glen Ridge, New Jersey. Yes, the day I’m talking about is … Read more
Isabel Calderon, Vice President of Congenital Hyperinsulinism International, is planning a very energetic event for Rare Disease Day to be held on February 18. The event will take place in Sept-Iles, Quebec at the Hall du Cégep. For more information you can call 418-583-2604. Read all about it: What kind of event are you planning … Read more
Rare Disease Day is just around the corner and it is a great day to devote to the knowledge of rare disorders in general, and congenital hyperinsulinism (HI), in particular. With the creation of this day, NORD and EURORDIS have done a fantastic job building a public awareness campaign about rare diseases. It is incumbent … Read more