How A Genetic Counselor Can Help You
Since most rare diseases are caused by changes in your genes, genetic testing is often part of the journey. But understanding your options may be challenging. Partnering with a genetic counselor can help you make the best choice for you and your family. **What is a Genetic Counselor?** A genetic counselor is a h…
Participating In A Clinical Trial: A Step-by-Step Guide for Rare Disease Patients and Families
![][1]This guide aims to provide general information and guidance for anyone affected by a rare disease who is considering participating in a clinical. The journey of participating in a trial can be a long journey towards hope for many people. The process can be complex and people, even people with a scientific and m…
Gene-Based Diagnosis 101: How to Successfully Navigate the Diagnostic Journey
As scientific innovation in genomic medicine continues to provide more hope for therapeutic options, there is a growing need for patients and families to understand how gene-based testing can contribute to an accurate and timely diagnosis. This series of toolkits, videos, and checklists share insights from rare advoc…
