Catching Up: New Educational Videos, Rare Disease Report Releases Resource Book

November 14, 2014

New videos by Novartis and the GraceWelsey Foundation help to explain complex rare disease. Rare Disease Report releases new resource book for doctors and patients.

Congratulations to the 2024 RARE Champions of Hope!

The RARE Champions of Hope Awards celebrate, honor and recognize those in the rare disease community who […]

Diagnosis

Caregiver Support Program: Carrie Borrello

In 2024, Global Genes partnered with Brad Thompson, M.A., NCC, LPC-S to host a caregivers support program […]

Healthcare

First 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 […]

Living with a RARE Disease

Maurya’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, […]

Diagnosis

Beginner’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 […]

Living with a RARE Disease

The Beginner’s Guide to Rare Disease

If you were just diagnosed with a rare disease or you are feeling you may remain undiagnosed […]

Living with a RARE Disease

TBX4 Family Film – A RAREly Told Stories Film

In February of 2024 Global Genes together with The Disorder Channel presented a workshop, RAREly Told Stories, […]

Living with a RARE Disease

The 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 […]

Diagnosis

Global Genes’ Sweet 16th Birthday Success Stories

August 15th, 2024 marks Global Genes’ 16th birthday! Since 2008, our organization has made significant efforts and […]

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Catching Up: New Educational Videos, Rare Disease Report Releases Resource Book

Related

Congratulations to the 2024 RARE Champions of Hope!

Caregiver Support Program: Carrie Borrello

First Definitive European Clinical Guidelines for BHD Diagnosis & Management

Maurya’s Rare Odyssey – a RAREly Told Stories film about Hereditary Spastic Paraplegia SPG4

Beginner’s Guide to Rare Disease, Jessica’s Version

The Beginner’s Guide to Rare Disease

TBX4 Family Film – A RAREly Told Stories Film

The yellow brick road feels a bit different for rare disease families.

Global Genes’ Sweet 16th Birthday Success Stories

Stay Connected