News, Events & Blogs
Precision Genomics for Rare Diseases: Shaping the Future of Treatment
The intersection of genomics and personalized medicine has transformed the landscape of healthcare. The Rare Genomics Institute (RG) emphasizes leveraging cutting-edge genomic technologies to identify the genetic basis of undiagnosed rare diseases and empowering patients with resources and the latest research. RG stands out from other organizations focused on rare diseases through its unique patient-centered approach. So far, RG has coordinated over 380 genetic sequencing projects and served over 825 families.
Finding Emotional & Mental Health Support for Patients & Caregivers
Living with a rare disease—or caring for someone who does—comes with unique emotional and mental health challenges. Feelings of isolation, anxiety, and uncertainty about the future are common. However, support is available. This blog will explore the emotional impact of rare diseases, coping strategies, and resources for mental health support.
Navigating Clinical Trials: A Guide for Rare Disease Patients
A condition is defined as a rare disease if it affects fewer than 200,000 individuals. Approximately 7,000 conditions meet this definition. In 2016, the United States Food and Drug Administration awarded $23 million dollars towards a four year period that supported research for 21 different rare diseases. However, most rare diseases lack disease-modifying therapies or effective medications for several reasons…