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Rare Disease Support: Research, Diagnosis, and Awareness Boost

This act aims to improve the lives of individuals with rare diseases by increasing funding for research, developing monitoring systems, and raising awareness among healthcare professionals. Citizens can expect better diagnosis, access to information, and potentially new treatment methods, impacting their health and quality of life.
Key points
Increased funding for rare disease research and the establishment of regional centers of excellence.
Creation of a national rare disease surveillance system to collect data on occurrence and progression.
Enhanced awareness and knowledge of rare diseases among healthcare providers for faster diagnosis.
Updating a key report on rare diseases to support further research and treatment development.
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Additional Information
Print number: 117_HR_9676
Sponsor: Rep. Carson, Andre [D-IN-7]
Process start date: 2022-12-22