Posts Tagged ‘NIH’
Rareness Creating Awareness – Rare Disease Day 2024 Recap
This Rare Disease Day was the rarest of all. It was on one that fell on a Leap Day. Given this occasion, we went all out for Rare Disease Day…
Read MoreA Peak Through the Clouds: NORD Breakthrough Summit
I was so excited to attend the NORD Breakthrough Summit, where patient advocacy professionals, pharmaceutical companies, biotech, FDA, and other key stakeholders in rare disease come together to learn and…
Read MoreA Guide to Genetic Testing
Recently, we had a webinar on the genetics of HLH, part of which touched on genetic testing to receive a diagnosis or pinpoint a mutation. In histiocytic disorders, genetic testing…
Read MoreScoring New Research Proposals
This is an exciting time for the Association and its connections to the college and medical communities!! The Histio Student Scholarship application window just closed, and the next Research Grant…
Read MoreWild Zebras Running Free: Rare Disease Day 2023
“Look for horses, not zebras.” That’s what doctors often teach in medical school to those learning how to diagnose illnesses. Looking for the rare disease comes later. First, they are…
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