Rare Disease Day is February 28, 2011. This is our day to grab the spotlight and focus the world’s attention on rare diseases, specifically, our disease: Congenital Hyperinsulinism (HI). We have 45 days to plan our strategy so we can make the most of this day. I had the pleasure of visiting the National Organization … Read more
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 … Read more
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, … Read more
I read somewhere recently that the average person gains two pounds between Thanksgiving and New Year’s Day. Every year, this pesky little fact haunts our waistlines as November turns to December and then January. This seems like a big deal to those of us trying to wiggle into our holiday party finery. Yet, it’s really … Read more
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 … Read more