Looking for Answers in Uncertainty: Managing When There is No Diagnosis or Prognosis
Watch this video on [YouTube][1] [1]: https://www.youtube.com/watch?v=gsHGIDrAFuQ
Your Diagnosis Matters - What are ICD and ORPHA Codes and Why are They Important
To improve care for rare disease patients we have to be able to identify them and track health outcomes. The World Health Organization’s medical classification list provides dedicated codes (ICD codes) to specific diagnoses, helping us to understand disease prevalence and develop clinical care guidelines. Learn about …
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…
RARE on the Road 2021: A Rare Disease Leadership Interactive Webinar
Global Genes partners with the EveryLife Foundation for Rare Diseases to bring patients and advocates the resources they need to effectively tell their story and raise awareness for their rare disease.
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…
Diversity of Odysseys
# **Diversity of Odysseys: The Diagnostic Challenges of Underserved People with Rare Diseases** The rare disease community is comprised of more than **7,000 individual diseases** and represents approximately **40****0 million people around the world**. ![][1] For those who have adequate access to healthcare, it tak…
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…
