Michigan House Bill HR0044

Michigan 2023-2024 Regular Session

• Introduced: 2/28/23
• Passed: 2/28/23

Caption

A resolution to declare February 28, 2023, as Rare Disease Day in the state of Michigan.

Impact

The resolution serves as a formal recognition of the importance of rare disease awareness, aiming to encourage public discussions about the medical and social issues surrounding these conditions. By aligning with the National Organization for Rare Disorders (NORD), the resolution seeks to foster a stronger community for affected individuals and advocates for better funding and resources in addressing these diseases. As more attention is drawn to this category of conditions, the hope is to inspire legislative and healthcare changes that could improve outcomes for patients.

Summary

House Resolution 44 aims to officially declare February 28, 2023, as Rare Disease Day in the state of Michigan. The resolution acknowledges the challenges faced by individuals with rare diseases, which collectively affect nearly 30 million Americans, highlighting the need for increased awareness and support. It specifically addresses the lack of available treatments for many rare diseases, as well as the difficulties families experience, including diagnostic delays and the search for medical specialists.

Contention

While this resolution is largely symbolic, it raises awareness of real issues regarding rare diseases that may lead to enhanced public and legislative engagement. However, some stakeholders might view the resolution as insufficient if it does not lead to concrete actions, such as increased funding for research or initiatives aimed at improving patient access to treatment. Hence, it is crucial that this formal declaration be followed by substantive advocacy and policy-making efforts to address the complex landscape of rare disease management.