News, Events & Blogs

The Future of Rare Disease Research
Blog Nic Albright Blog Nic Albright

The Future of Rare Disease Research

Rare diseases may affect only a handful of people, but together they impact more than 400 million people worldwide—that’s roughly 1 in 17 people. Historically, they’ve been neglected because of small patient populations and fragmented research efforts. But today, thanks to new technologies and global collaboration, the future of diagnosis and treatment has never looked brighter.

Read More
Precision Genomics for Rare Diseases: Shaping the Future of Treatment
Blog Namrata Khurana Blog Namrata Khurana

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.

Read More
Misdiagnosed With Monkeypox: Understanding How Rare Conditions Are Presented
Blog Daryl Velez Blog Daryl Velez

Misdiagnosed With Monkeypox: Understanding How Rare Conditions Are Presented

Even the most qualified medical practitioners make mistakes when attempting to diagnose patients’ rare conditions. Therefore, the average person cannot be held to a high standard when it comes to recognizing whether someone in their lives has a rare disease. It would be nearly impossible for a layperson to identify whether someone they pass by on their daily commute has a disease, let alone a rare one.

Read More