Ruben’s GACI Story

• Post author:PW Collaborator
• Post published:September 15, 2025
• Post category:Generalized arterial calcification of infancy-1 (GACI1)

Acknowledgement: Patient Worthy is honored to share this story from our friends at GACI Global. To see the article in its original format, please click here. Born on World Heart…

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Too Little Too Late: A Mom’s Plea for Improved GACI Screening

• Post author:Kathy Devanny
• Post published:July 30, 2025
• Post category:Generalized arterial calcification of infancy-1 (GACI1)

Acknowledgement: Patient Worthy is honored to share this story from our friends at GACI Global. To view the original article, please click here. Sharon’s passion for children shines in her…

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Liam’s Story – GACI Caregiver

• Post author:PW Collaborator
• Post published:April 2, 2025
• Post category:Generalized arterial calcification of infancy-1 (GACI1)

Patient Worthy is honored to present this story by way of the GACI Global. GACI Global is a nonprofit organization whose mission is to connect families affected by Generalized Arterial…

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Facing The Uncertainty of GACI – Sienna’s Story

• Post author:PW Collaborator
• Post published:March 17, 2025
• Post category:Generalized arterial calcification of infancy-1 (GACI1)

Only about 50% of those born with GACI survive. Patient Worthy is grateful to GACIGlobal for the ability to share Sienna's Story.  GACI Global is a nonprofit organization whose mission…

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The story of Laura and Martina and a rare disease called GACI with two very different outcomes.

• Post author:Rose Duesterwald
• Post published:February 24, 2025
• Post category:Generalized arterial calcification of infancy-1 (GACI1)

This article is written by Enrico Orzes and originally published on Osservatorio Malattie Rare (OMaR).  It has been translated from Italian. Patient Worthy is grateful to the team at OMaR…

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Photo courtesy of GACI Global

Rare Community Profiles: Creating a Strong Patient Advocacy-Pharma Partnership: How Inozyme Pharma and GACI Global Came Together for Impact

• Post author:Jessica Lynn
• Post published:December 6, 2023
• Post category:Generalized arterial calcification of infancy-1 (GACI1)

  Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…

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source: pixabay.com

Webinar: Hearing Loss, From GACI Global

• Post author:James Moore
• Post published:June 24, 2022
• Post category:Generalized arterial calcification of infancy-1 (GACI1)

On June 10, 2022, Patient Worthy partner GACI Global hosted an hour long webinar on the subject of hearing loss, featuring Dr. Karen Wilber. GACI Global is a nonprofit organization…

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