Searching for A Diagnosis: Colleen Olson
Colleen Olson, Co-Founder and President of the DHPS Foundation, tells how genetic testing helped physicians identify the rare condition that affects two of her three children.
RARE Patient Advocacy Summit
_**Please join us for our**_ 3rd Annual “RARE Patient Advocacy Summit_”_ held on **September 11-12, 2014** at the Hyatt Regency in Huntington Beach, California. _**Empowering Patient Advocates to Become Successful ****Activists**_ [Download Agenda][1][ (PDF) ][2][Download Speaker Bios][3] (PDF) Download PDF slides: [D…
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…
Genetic Testing: Is This My Path to a Diagnosis?
# **Introduction **![][1] More than 350 million people worldwide suffer from a rare disease. If a disease affects fewer than 200,000 people in the United States, it is considered rare. There are currently about 7,000 rare diseases identified worldwide, and approximately 80 percent are caused by genetic changes. These…
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…
