A quick video overview of RARE-X and how it is using Federated Data to help patients and researchers.
Related
Week in RARE 2024: “Holding Moses” Film Screening Discussion
After a screening of the film Holding Moses at Global Genes’ Week in RARE 2024, we welcomed […]
Read moreWEBINAR: “Supporting The Mental Health Needs of Rare Disease Patients, Families, and Communities” with Dr. Al Freedman
On October 16th, Dr. Al Freedman, Psychologist, Consultant, Keynote Speaker and SMA Father, joined us to host […]
Read moreLife Through A Lens: A RAREly Told Stories Film
Jeff Levenson submitted his film, “Life Through A Lens,” about a Hollywood photographer who has Adult polyglucosan […]
Read morePass Me The Potatoes, Please: A RAREly Told Stories Film
Lori Renna Linton made the film, “Pass Me The Potatoes, Please” about Hereditary Spastic Paraplegia (HSP) and […]
Read moreWEBINAR: Financial Assistance for Rare Disease, Parts 1 and 2
Our Financial Assistance Webinar series videos are available to view below! Part 1 answers the question: what […]
Read moreMuscle Memories — a RAREly Told Stories Film on OPMD
In February of 2024 Global Genes together with The Disorder Channel presented a workshop, RAREly Told Stories, […]
Read moreMetamorphosis Mine: a RAREly Told Stories Film about Scleroderma
In February of 2024, Global Genes together with The Disorder Channel presented a workshop, RAREly Told Stories, […]
Read moreWEBINAR: Showing Up 101
On August 15th, Global Genes hosted the webinar “Showing Up 101”. This session is a gently guided, […]
Read moreMaurya’s Rare Odyssey – a RAREly Told Stories film about Hereditary Spastic Paraplegia SPG4
In February of 2024 Global Genes together with The Disorder Channel presented a workshop, RAREly Told Stories, […]
Read more
