The Boston Marathon: Running for Rare Diseases

Jen was running toward us, her arms spread out like wings.  We had been waiting for this moment for hours, for Jen to run on by.  But she didn’t.  She sacrificed some seconds from her time to stop and give us all hugs. That’s just like Jen Tedstone.  So full of love and energy that … Read more

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CHI Collaborates with Rare Disease Patient Groups in New Jersey

Last Monday, March 4, Congenital Hyperinsulinism International and thirteen other patient organizations presented a program aimed at raising awareness in the state of New Jersey of the plight of people living with rare diseases.  NORD and BioNJ, the Biotech trade organization for New Jersey, supported our efforts to deliver this presentation which took place at … Read more

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“A Wonderful Night for a Great Cause”

On February 28, 2013, Congenital Hyperinsulinism International held its second “rare” event in honor of the 6th Rare Disease Day in Montclair, New Jersey at the historic and beautiful Van Vleck House.  The purpose of “A Very Special Cocktail Party” was threefold: to raise awareness of the needs of all rare disease patients, to share … Read more

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