Rare Disease

Human genetics and genomics has a profound impact on individuals, families, and communities. By showcasing narratives highlighting the potential of genetic research, ASHG seeks to honor those who participate in research and underscore the real-world implications of scientific inquiry. Hearing the voices of patients and their families can help members of the genetics and genomics... Read More

In honor of Rare Disease Week, ASHG staff and over 500 rare disease advocates from across the U.S. took part in the EveryLife Foundation for Rare Disease’s 2024 Legislative Conference in Washington, DC, from February 25-28. During this multi-day event participants were educated on policy proposals impacting the rare disease community ahead of a visit... Read More