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BioMarin – Update for Achondroplasia Associations
As more cases of COVID-19 are confirmed, we recognize the increased challenges and concerns faced by participants in the BioMarin clinical studies. The safety and well-being of study participants, healthcareproviders, and our communities is paramount as the ongoing COVID-19 pandemic impacts the health and livelihoods of many worldwide. BioMarin Pharmaceutical, Inc., April 2020 Click here for full report.
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Think Beyond the Extremities – Complications in Skeletal Dysplasia
Watch the LLRS 2019 Presidential Guest Lecture: Think Beyond the Extremities – Complications in Skeletal Dysplasia by William G. Mackenzie, MD, FRCSC, FACS.
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Little legend: Child with rare form of dwarfism begins his biggest adventure yet
A child’s first day of school can be a daunting experience – both for the new student and their anxious parents. But when your child is just a little bit different – like five-year-old Floyd Henry Morley – the first day of school brings with it a whole new host of challenges. Floyd was born with a rare form of dwarfism called Achondroplasia. People with Achondroplasia typically have short arms and legs, an enlarged head and an average-sized torso. 60 Minutes first met Floyd and his family in 2014 when he was just 5 months old. After the initial shock of Floyd’s diagnosis – which came completely at random –…
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#RareDiseaseDay 2019
Out now – new official #RareDiseaseDay video! Watch Filip and Alina’s story. He is from Romania and lives with achondroplasia Share the video to raise awareness of rare diseases for Rare Disease Day 2019. #ShowYourRare Rare disease day is on February 28!
