Related
A Reflection Of My First Week in RARE Experience
By: Lauren McCabe, Global Genes Staff Tired. Exhausted. Grateful. Full. All of these words represent how my […]
Read moreCaregiver Support Program: Ana Contreras
In 2024, Global Genes partnered with Brad Thompson, M.A., NCC, LPC-S to host a caregivers support program […]
Read moreCaregiver Support Program: Carrie Borrello
In 2024, Global Genes partnered with Brad Thompson, M.A., NCC, LPC-S to host a caregivers support program […]
Read moreFirst Definitive European Clinical Guidelines for BHD Diagnosis & Management
Global Genes asked Global Advocacy Alliance members to share their successes – whether it is meeting an organizational goal, kicking […]
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 moreBeginner’s Guide to Rare Disease, Jessica’s Version
When we asked Jessica Patay for some resources to help guide those just beginning to face a […]
Read moreThe Beginner’s Guide to Rare Disease
If you were just diagnosed with a rare disease or you are feeling you may remain undiagnosed […]
Read moreTBX4 Family Film – A RAREly Told Stories Film
In February of 2024 Global Genes together with The Disorder Channel presented a workshop, RAREly Told Stories, […]
Read moreThe yellow brick road feels a bit different for rare disease families.
There’s No Place Like Hope. There’s No Place Like Hope. You might be right to say we […]
Read more