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Daily Archives: October 5, 2026

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I Live With LGMD. I Want Patients to Help Shape What Comes Next.

I Live With LGMD. I Want Patients to Help Shape What Comes Next.

  • Post author:Patient Worthy Contributor
  • Post published:October 5, 2026
  • Post category:Limb-girdle muscular dystrophy

When I was seven, my parents were trying to understand why I was becoming ill. I spent time in hospitals and underwent painful muscle biopsies. Doctors knew I had a…

Continue Reading I Live With LGMD. I Want Patients to Help Shape What Comes Next.
My Big Sister

My Big Sister

  • Post author:Patient Worthy Contributor
  • Post published:October 5, 2026
  • Post category:Rare Disease

Editor's Note: Patient Worthy is honored to present this story, shared with us by our friends at the Courageous Parents Network. Originally written by Dr. Adebimpe Adewusi, the article can…

Continue Reading My Big Sister
FDA Clears First Expandable Heart Valve for Pediatric Patients

FDA Clears First Expandable Heart Valve for Pediatric Patients

  • Post author:Austin Newman
  • Post published:October 5, 2026
  • Post category:Rare Disease

As reported on Becker's Hospital Review, the FDA has approved a first-of-its-kind pulmonary heart valve that can be enlarged after implantation, potentially allowing the device to accommodate a child’s growth…

Continue Reading FDA Clears First Expandable Heart Valve for Pediatric Patients
The Mentor She Wished She Had - How Elizabeth Became a Lifeline for EB
Finding Strength Together: Scott and Katie’s Journey with Advanced Kidney
You Are Not Alone: Empowering the Advanced Kidney Cancer Community
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
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