Bill 118 HRES 1036, also known as the "Rare Disease Day" bill, is a piece of legislation that expresses support for designating February 29, 2024, as "Rare Disease Day." The purpose of this designation is to raise awareness about rare diseases and the challenges faced by those living with them.
The bill highlights the fact that rare diseases affect millions of Americans and their families, often leading to significant medical, emotional, and financial burdens. By designating a specific day to focus on rare diseases, the hope is to bring attention to these often overlooked conditions and advocate for increased research, treatment options, and support for those affected.
The bill emphasizes the importance of collaboration between patients, caregivers, healthcare providers, researchers, and policymakers in addressing the needs of individuals with rare diseases. It also recognizes the contributions of advocacy organizations and patient support groups in raising awareness and providing resources for those living with rare diseases.
Overall, Bill 118 HRES 1036 aims to shine a spotlight on the challenges faced by individuals with rare diseases and to encourage continued efforts to improve diagnosis, treatment, and support for this vulnerable population. By designating February 29, 2024, as "Rare Disease Day," the bill seeks to promote greater understanding and compassion for those living with rare diseases and to inspire action towards better outcomes for these individuals.