H.R.es209 - Expressing support for the designation of April 5, 2025, as Barth Syndrome Awareness Day. (119th Congress)
Summary
H.Res.209 expresses support for designating April 5, 2025, as "Barth Syndrome Awareness Day." The resolution highlights the rare, life-threatening nature of Barth syndrome, its impact on affected individuals and families, and the need for increased awareness, research, and treatment development. It also acknowledges the role of organizations like the Barth Syndrome Foundation in supporting these efforts.
Expected Effects
The resolution itself does not create any legally binding requirements or allocate funding. Its primary effect would be to raise awareness of Barth syndrome among the public, healthcare professionals, and policymakers. This increased awareness could potentially lead to greater research funding, improved diagnosis rates, and the development of new treatments.
Potential Benefits
- Increased awareness of Barth syndrome, a rare and life-threatening genetic disorder.
- Encouragement of early and accurate diagnosis of the condition.
- Promotion of research into new treatments, diagnostics, and cures for Barth syndrome.
- Support for regulatory pathways for drug development for ultra-rare diseases.
- Potential for improved access to care and resources for individuals and families affected by Barth syndrome.
Potential Disadvantages
- The resolution itself has no direct disadvantages as it is a non-binding expression of support.
- However, focusing on one specific rare disease may divert attention or resources from other equally deserving conditions.
- There are no immediate financial implications, but increased awareness could lead to calls for increased government funding, which would need to be balanced against other priorities.
Constitutional Alignment
The resolution aligns with the general welfare clause of the US Constitution, as it aims to promote awareness and research for a rare disease, ultimately contributing to the health and well-being of a small segment of the population. The resolution does not infringe upon any specific constitutional rights or limitations. It falls within the legislative power to address health-related issues and support medical research.
Impact Assessment: Things You Care About ⓘ
This action has been evaluated across 19 key areas that matter to you. Scores range from 1 (highly disadvantageous) to 5 (highly beneficial).