Jennifer and Noah Seidman’s involvement in the rare disease community began when Jennifer’s son and Noah’s brother, Benjamin, was diagnosed with #SanfilippoSyndrome—a progressive neurological condition—at just 15 months old. In honor of Benjamin’s legacy, they are dedicated to advocating for families, raising awareness and driving meaningful change in the rare disease space. Through their work, they offer support, amplify the voices of others and ensure no family feels alone in their journey. Listen to their #RAREis One story as they turn loss into action, inspiring hope and resilience.

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