Here's another great story from The NEXT Report from Global Genes.
You can read the full report here.
Technology is changing the face of rare disease in every aspect in the diagnosis, drug development, and treatment of disease.
At the most fundamental level it is a communication tool that has allowed people with rare disease to participate in a global community and find others with the same condition, learn from each other, and amplify their voices.
When Claire Barrow was diagnosed in 2019 at the age of 13 with the rare bone condition hypophosphatasia,she had difficulty finding information about the condition or anyone else who had it. She and her brother Hill convinced their parents that they should create an app to help rare disease patients with the same conditions connect with each other and RareGuru born. Today, it has about 2,500 users in seven countries. #hypophosphatasia #nextreport
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Daniel DeFabio
Global Genes
Director of community engagement
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