Rare Diseases Now (RDNow) is a campus-wide initiative focused on addressing the significant challenges in rare disease care.
RDNow strives to improve the lives of individuals and families affected by rare diseases through a multifaceted approach. This includes:
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Data Analysis: Utilizing advanced methods to analyze data and uncover answers for families with undiagnosed conditions. This may involve genomic sequencing, bioinformatics, and other analytical techniques.
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Collaboration: Working with experts across various disciplines within the campus to enhance health systems. This collaborative environment facilitates the sharing of knowledge and resources.
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Improving Access: Focusing on expanding access to clinical trials for rare disease patients. Overcoming barriers to participation in these trials is a crucial step in advancing treatment options.
In essence, RDNow acts as a hub, connecting patients and families with the resources and expertise needed to navigate the complexities of rare disease diagnosis and treatment. The initiative aims to accelerate discovery, improve care delivery, and ultimately, improve the health outcomes for those affected by rare diseases.
