Creating a Faster Path to a Rare Disease Diagnosis
January 5, 2022
Despite a growing number of diagnostic tools, it still takes an average of six years after symptom onset for a patient with a rare disease to receive an accurate diagnosis. A recent report from the pharmaceutical company Takeda identifies three priority policy reforms designed to address the barriers patients with rare and genetic conditions face in getting a diagnosis. The report “Reducing Time to Diagnosis for People Living with Rare Diseases: A Conversation on U.S. Policy Opportunities” offers solutions that are designed to address persistent and long-standing barriers that contribute to an ongoing cycle of missed or delayed diagnosis and treatment for patients.
We spoke to Takeda Senior Vice President of U.S. Rare Disease Cheryl Schwartz and RARE-X CEO Charlene Son Rigby about the report, the recommendations it makes, and what it will take to turn these ideas into action.
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