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Monday, April 20, 2026 - Week 17 CURE SYNGAP1 joins the Haystack Project in petitioning FDA for more clarity. PR:
static1.squarespace.com/static/5966cc2220099e91326caaec/t/69d7dbb80155f46e144ae2e5/1775754168227/4.9.26+press+release+petition_vf.pdf
Petition:
static1.squarespace.com/static/5966cc2220099e91326caaec/t/69d7e016d5986e16ff09b64c/1775755288463/Letter+Head+Petition+for+rulemaking+to+amend 21+CFR+§+314.126+and+ §312.47+(1).pdf
Reuters 4/1:
reuters.com/sustainability/boards-policy-regulation/rare-disease-advocacy-group-urges-trump-administration-restore-fda-clarity-2026-04-01
Pink Sheet:
insights.citeline.com/pink-sheet/pathways-and-standards/review-pathways/could-structured-not-ad-hoc-us-fda-flexibility-increase-rare-disease-development-certainty-BYXJENIJLFEINOSO72RS53ZJHE
Show your support here:
regulations.gov/document/FDA-2026-P-3666-0001
Paragraph 1 – Share information about you and SYNGAP1. Paragrap...
Posted on YouTube at
4/21/2026, 6:13:50 PM
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