The Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease has released a roadmap detailing three tracks focused on patient and family empowerment, technology, and genetic consultation. All of which can help families receive an accurate diagnosis earlier on in their child’s life.
One out of every 10 people lives with a rare disease, an estimated 350 million people globally, making “rare disease” a bit of a misnomer in the medical field. Regardless of where a family lives, it can take them up to five years to receive a rare diagnosis for their child. Throughout this mystifying journey, families face multiple misdiagnoses, even after spending their time and resources seeking answers from specialists and doctors. In turn, this results in delays in receiving the appropriate treatment for their child and/or time lost in planning for their child and family’s quality of life.
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