Joey’s Story: A Mother’s Reflection for Rare Disease Month

Navigating the Unknown: A Story of Resilience, Hope, and Advocacy in Rare Disease

Study Finds One in Four People With Sarcoma Carry a Pathogenic Variant: Why Germline Testing Matters
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Joey’s Story: A Mother’s Reflection for Rare Disease Month
  • JoeyLynn Nolan
  • February 25, 2026

Not only during Rare Disease Month, but every day, I think of my son Joey. He was only with us for seven months, but he changed our lives in ways that are hard to put into words. I share his story to honor him, and to help others understand TBC1D24 disorder, a condition so rare that most families don’t hear its name until it becomes …

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Navigating the Unknown: A Story of Resilience, Hope, and Advocacy in Rare Disease

  • February 18, 2026
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The Gene Scene: RPE65

  • February 17, 2026
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The Gene Scene: LMNA

  • February 10, 2026
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The Gene Scene: KCNH2

  • January 27, 2026
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The Power of Progress: Philip's NF1 Clinical Trial Experience
  • Meagan Farmer
  • May 22, 2024

We had the opportunity to connect with Renie and Philip Moss ahead of Neurofibromatosis Awareness Month. Philip has neurofibromatosis type 1 (NF1). It is associated with many features but most often causes growths called neurofibromas (usually benign) as well as characteristic skin and eye findings.1 Malignant or cancerous tumors are rare.1 You …

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Navigating NF1: The Moss Family’s Story of Resilience and Hope

  • May 16, 2024
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Transforming Fear into Action and Advocacy: Our Family’s Lynch Syndrome Story

  • March 22, 2024
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Peace of Mind: Michelle Majewski Trusts the Patient for Life Program to Share Answers for Her Son Owen

  • November 14, 2023
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Passing on a Legacy of Health: Ben Huebsch Shares His BRCA Story for Men’s Health Week

  • June 14, 2023

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