Fabio
81 lines
4.6 KiB
Markdown
81 lines
4.6 KiB
Markdown
---
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type: "Bill"
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title: "AN ACT TO AMEND TITLE 29 OF THE DELAWARE CODE ESTABLISHING THE DELAWARE RARE DISEASE ADVISORY COUNCIL."
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description: "This bill establishes the Delaware Rare Disease Advisory Council which, among other things, is intended to educate medical professionals, government agencies, legislators, and the public about rare diseases. There are about 7,000 known rare diseases, and they create major public health challenges. The Advisory Council is charged with engaging in activities intended to benefit rare disease patients in Delaware, including encouraging and securing funding for the development of new treatments for rare diseases."
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jurisdiction: "us/states/de"
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legislature: "Delaware General Assembly"
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session: "152"
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identifier: "SB 55"
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citation: "Delaware SB 55 (152)"
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classification: ["bill"]
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subjects: []
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status: "enacted"
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primary_sponsors: ["Brian Pettyjohn", "Darius J. Brown", "David L. Wilson", "David P. Sokola", "Kendra Johnson", "Marie Pinkney", "Michael Ramone", "Nicole Poore", "Paul S. Baumbach", "Peter C. Schwartzkopf", "Sarah McBride", "Sean Matthews", "Stell Parker Selby", "William J. Carson"]
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version_count: 2
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action_count: 9
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vote_count: 2
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first_action: "2023-03-01"
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last_action: "2023-07-26"
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source: "openstates"
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source_identifier: "ocd-bill/1ba7ffd3-b103-4b65-8314-2e76dee1db1e"
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source_url: "https://legis.delaware.gov/BillDetail?LegislationId=130030"
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source_hash: "8a7cd6d37af7acc79ba0a9b49241fd842731c56a5569445723b9330361ebeac3"
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vintage: "2026-07-01"
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source_snapshot: "https://data.openstates.org/daily/2026-07-01/public.pgdump"
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retrieved_at: "2026-07-06"
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confidence: "reported"
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tags: ["legislation", "bill", "us-de"]
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---
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# Delaware SB 55 (152) — AN ACT TO AMEND TITLE 29 OF THE DELAWARE CODE ESTABLISHING THE DELAWARE RARE DISEASE ADVISORY COUNCIL.
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This bill establishes the Delaware Rare Disease Advisory Council which, among other things, is intended to educate medical professionals, government agencies, legislators, and the public about rare diseases. There are about 7,000 known rare diseases, and they create major public health challenges. The Advisory Council is charged with engaging in activities intended to benefit rare disease patients in Delaware, including encouraging and securing funding for the development of new treatments for rare diseases.
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## Version chain
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The bill's text revisions, in order — the diff chain from filing to enrollment.
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1. **Bill Text** (committee substitute) — [source](https://legis.delaware.gov/json/BillDetail/GenerateHtmlDocument?legislationId=130030&legislationTypeId=1&docTypeId=2&legislationName=SB55)
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2. **SA 1 to SB 55** (committee substitute) — [source](http://legis.delaware.gov/json/BillDetail/GeneratePdfDocument?legislationId=140462&legislationTypeId=5&docTypeId=2)
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## Votes
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- SM — **21–0** (pass) · upper
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- 3/4 — **39–0** (pass) · lower
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## Sponsors
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- Brian Pettyjohn — primary (person)
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- Darius J. Brown — primary (person)
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- David L. Wilson — primary (person)
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- David P. Sokola — primary (person)
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- Kendra Johnson — primary (person)
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- Marie Pinkney — primary (person)
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- Michael Ramone — primary (person)
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- Nicole Poore — primary (person)
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- Paul S. Baumbach — primary (person)
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- Peter C. Schwartzkopf — primary (person)
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- Sarah McBride — primary (person)
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- Sean Matthews — primary (person)
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- Stell Parker Selby — primary (person)
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- William J. Carson — primary (person)
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## Timeline
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The legislative action history — every referral, reading, and vote.
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- **2023-03-01** Introduced and Assigned to Health & Social Services Committee in Senate `introduction, referral-committee`
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- **2023-03-08** Reported Out of Committee (Health & Social Services) in Senate with 7 Favorable `committee-passage, committee-passage-favorable`
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- **2023-06-01** Amendment SA 1 to SB 55 - Introduced and Placed With Bill `amendment-introduction`
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- **2023-06-08** Amendment SA 1 to SB 55 - Passed By Senate. Votes: 20 YES 1 ABSENT `amendment-passage`
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- **2023-06-08** Passed By Senate. Votes: 21 YES `passage`
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- **2023-06-08** Assigned to Health & Human Development Committee in House `introduction, referral-committee`
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- **2023-06-14** Reported Out of Committee (Health & Human Development) in House with 3 Favorable, 6 On Its Merits `committee-passage, committee-passage-favorable`
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- **2023-06-20** Passed By House. Votes: 39 YES 2 ABSENT `passage`
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- **2023-07-26** Signed by Governor `executive-signature`
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## Source
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OpenStates / OpenCivicData bulk snapshot [2026-07-01](https://data.openstates.org/daily/2026-07-01/public.pgdump); origin `ocd-bill/1ba7ffd3-b103-4b65-8314-2e76dee1db1e`. Confidence: reported (aggregated from official Delaware legislature records).
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