Contributed by reader Jenni Heavey Researchers at the University of Oxford in the UK have developed a new blood test to help people diagnosed with the lysosomal storage disorder, Niemann-Pick Disease type C (NPC). The progressive and fatal inherited disease occurs in one in every 150,000 children […]
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World Rare Disease Day is an event that occurs annually every February 28th, assuming it isn’t leap year! Essentially the last day of February. The goal behind the movement is to raise awareness about rare diseases and promote improved access to treatments and medical opportunities for individuals […]
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Each year October is set aside to have a focal point of Niemann-Pick Disease Awareness Month! The National Niemann Pick Disease Foundation has been promoting this the last 12 years to help create buzz and awareness about this horrible disease. Along with families affected by Niemann-Pick, people […]
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The Niemann-Pick Children’s Fund is proud to announce it’s participation in the 40th annual Hospital Hill Run in downtown Kansas City, Missouri as a Sliver Charity Partner! HHR has been giving local charities opportunities over the last handful of years to use this stage that is expecting […]
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We wanted to wish everyone a fantastic celebration of holidays at this time of the year! 2013 is just right around the corner and for many in the rare disease community they are reminded that hope and time may not be on their side. Take extra time […]
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