Julie Raskin

Tonight the artwork of Kivrin Hopkins, a nine year old girl with congenital hyperinsulinism, will be displayed at the Rare Voices Gala in Washington DC, honoring members of congress, congressional staff and patient advocates who have raised the profile of rare diseases. Kivrin’s artwork is a 2012 Grand Prize winner of the Rare Artist Contest … Read more

Yesterday I wrote about the very positive near future projections for investments into rare disease drug research and development. We need all of you to take action now to insure that this bright future isn’t threatened by “sequestration,” the automatic budget cuts that are scheduled to take place on January 1, 2013 if action isn’t … Read more

At a conference I attended last month in Washington DC, I learned that investors, pharmaceutical companies and researchers see rare disease treatments as a potential “next frontier” in the world of drug and device development. We’re living in a time when the blockbuster meds designed for more common ailments may be becoming less profitable while … Read more

Congenital Hyperinsulinism International (CHI) is deeply concerned about all congenital hyperinsulinism (HI) families affected by Hurricane Sandy as we head into the first post-storm weekend. As difficult as it is for all of us to live with damage to a home, a car, days without power, telephone, cable, no school, in some cases, no work, … Read more

In rural New Jersey, while attending the Walk-a-Thon to support Camp Nejeda, a diabetes summer camp and year-round educational center for children and teenagers with diabetes and their families (full disclosure: my son has attended the summer camp for many years), I had the opportunity to learn a little more about some incredible cutting edge … Read more