Julie Raskin 
As a global organization, our staff at Congenital Hyperinsulinism International (CHI) have opportunities to assist patients and doctors in faraway places. Every so often there is a nearby opportunity, allowing our staff to engage face-to-face within their home state. There is a special connection in getting to answer to the needs of the rare disease … Read more
Congenital Hyperinsulinism International is thrilled to welcome Trudy Ward MSc; RNChild; RNAdult; Queens Nurse to our Board of Trustees. Trudy joins the Board as a parent of two grown daughters in Brighton, England, one of whom lives with congenital hyperinsulinism and is now 25 years old. Her partner, Janet Lee, is also a member of … Read more
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
Natural History Repeats Itself: My journey promoting and participating in natural history studies When I first heard the words “natural history study,” the only thing that came to mind was the Museum of Natural History – and I had no idea if the two “natural histories” were related in any way. Now, I understand why … Read more
Guest blog post by Julie Krcmaric In mid-March, I received a message from a high school friend. We had lost touch over the years but recently reconnected when both our children were diagnosed with rare disorders, throwing us both into the unknown. Her message read that the Liberty Science Center was hosting a free Rare … Read more