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…
![][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…
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…