Designating November 7 of each year as ''Shwachman Diamond Syndrome Awareness Day''.
- Bill Number
- H.Res. 1133
- Origin Chamber
- House
- Congress
- 119th Congress, Session 2
- Policy Area
- Health
- Status
- Introduced
- Latest Action
- 2026-03-24: Referred to the House Committee on Energy and Commerce.
- Last Updated
- 2026-04-21T17:11:38Z
AI-Generated Summary
Purpose
This House Resolution (H. Res. 1133) aims to designate November 7 of each year as "Shwachman Diamond Syndrome Awareness Day" to raise public awareness about Shwachman-Diamond Syndrome (SDS), a rare genetic disorder, encourage support for affected individuals, and promote research into treatments.
Key Provisions
- Supports the designation of November 7 as "Shwachman Diamond Syndrome Awareness Day" (noting November 7, 2026, as a starting point).
- Highlights SDS characteristics: A rare autosomal recessive genetic disorder (requiring faulty genes from both parents) affecting bone marrow, pancreas, and skeleton; impacts ~2,000 Americans (1 in 80,000 newborns); causes issues like infections, poor nutrient absorption, skeletal problems, and increased leukemia risk.
- Emphasizes needs: Underdiagnosis due to variable symptoms; no cure, but early management improves life quality; reduces life expectancy by over 30 years.
- Calls for action: Increase awareness, support patients, and boost national, state, and local research initiatives.
- Effective date: Takes effect immediately upon adoption.
Significant Changes to Existing Law
- None. This is a non-binding resolution expressing the House of Representatives' support; it does not create enforceable law or amend statutes.
Potential Impacts
- Citizens: Greater public understanding of SDS may lead to earlier diagnosis, better support for ~2,000 affected Americans and families, and improved quality of life through awareness.
- Government agencies: Symbolic encouragement for agencies like the National Institutes of Health to prioritize rare disease research, though no funding or mandates are imposed.
- International relations: Minimal; focuses on U.S. residents.
- No direct fiscal or regulatory burdens.
Main Stakeholders Affected
- Individuals with SDS and families: Primary beneficiaries through heightened awareness and research promotion.
- Healthcare providers: Benefits from emphasis on multidisciplinary care, enzyme therapy, and monitoring.
- Researchers and medical community: Encouraged to advance treatments for this under-researched condition.
- Bipartisan sponsors (Reps. Kean and Gottheimer) and House Energy and Commerce Committee: Involved in introduction and referral.
Notable Legal, Constitutional, or Political Implications
- Legal: Purely symbolic; lacks force of law, similar to other awareness day resolutions.
- Constitutional: Aligns with Congress's power to express views (Article I); no enforcement raises no separation-of-powers issues.
- Political: Bipartisan effort highlights congressional focus on rare diseases; may inspire similar state/local actions or future funding bills without controversy.
This summary was generated by AI and may contain inaccuracies. Refer to the official source document for the authoritative text.
Sponsor
Cosponsors (1)
Rep. Gottheimer, Josh [D-NJ-5]
Recent Actions
- 2026-03-24: Referred to the House Committee on Energy and Commerce.
- 2026-03-24: Submitted in House
- 2026-03-24: Submitted in House
Bill Versions
- Designating November 7 of each year as "Shwachman Diamond Syndrome Awareness Day". — issued 2026-03-24 — PDF (4 pages)