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  "path": "/2026/04/14/hunter-syndrome-avlayah-age-based-approvals/?utm_campaign=rss",
  "publishedAt": "2026-04-14T08:30:00.000Z",
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  "tags": [
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  "textContent": "Rare disease clinical trials, policy discussions, and advocacy initiatives often leave adults behind.",
  "title": "Opinion: My brother can’t access a just-approved breakthrough drug for his rare disease",
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