USA Patients and carers with lived experience of a disease have valuable insights to share with physicians and drug developers alike. This is especially true of rare diseases, defined in the US as those that affect fewer than 200,000 people nationwide and which collectively impact over 30 million Americans. For these…
USA Michael Pearlmutter, CEO of the EveryLife Foundation for Rare Diseases (the EveryLife Foundation), brings a deeply personal motivation and commitment to driving meaningful change for the rare disease community. In this conversation, Pearlmutter reflects on the Foundation’s mission, its impact across the rare disease ecosystem, and the evolving opportunities to…
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