The Myrovlytis Trust is creating a patient registry for Birt-Hogg-Dubé Syndrome (BHD) to better understand the epidemiology of the disease, its prevalence, and the disease trajectory, to improve the quality of life for this community, and to ultimately develop treatments for BHD. Six hundred families are currently known to carry the gene mutation that causes… Read more »
QualityMetric and Pulse Infoframe announced today their partnership and vision to create the first scientifically validated rare disease instruments across conditions. Once deployed, these instruments will benefit not only rare disease patients and families, but also researchers and drug developers working to help this vastly underserviced population as they advance rare disease care and treatments…. Read more »
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