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“Wait, How Do You Spell That?”: Amplifying Rare Disease Voices Through Podcasting

“Wait, How Do You Spell That?”: Amplifying Rare Disease Voices Through Podcasting

  • Post author:Bree Clare
  • Post published:June 23, 2025
  • Post category:Rare Disease

In the vast world of podcasts, “Wait, How Do You Spell That?” stands out as a beacon for patients, families, and advocates navigating the complex, often isolating journey of rare…

Continue Reading “Wait, How Do You Spell That?”: Amplifying Rare Disease Voices Through Podcasting
Throwback Thursday: Updates on Patients from Patient Worthy’s Past

Throwback Thursday: Updates on Patients from Patient Worthy’s Past

  • Post author:Bree Clare
  • Post published:June 19, 2025
  • Post category:Mucolipidoses (ML)

I had learned that the many twists and turns on our rare disease path were similar to the families we met Originally published on May 11, 2022, this article explores celebrates author…

Continue Reading Throwback Thursday: Updates on Patients from Patient Worthy’s Past
A Decade of Impact: Patient Worthy’s 10-Year Journey Empowering the Rare Disease Community

A Decade of Impact: Patient Worthy’s 10-Year Journey Empowering the Rare Disease Community

  • Post author:Bree Clare
  • Post published:June 16, 2025
  • Post category:Rare Disease

Launched in May 2015, Patient Worthy set out with a bold mission: to amplify the voices of rare disease and chronic illness patients, and to connect and inform a community…

Continue Reading A Decade of Impact: Patient Worthy’s 10-Year Journey Empowering the Rare Disease Community
PatientWorthy.com: A Decade of Impact in the Rare Disease Community

PatientWorthy.com: A Decade of Impact in the Rare Disease Community

  • Post author:Bree Clare
  • Post published:June 1, 2025
  • Post category:Rare Disease

Since its inception in 2015, PatientWorthy.com has emerged as a beacon of hope, information, and support for the global rare disease community. From humble beginnings with its very first post,…

Continue Reading PatientWorthy.com: A Decade of Impact in the Rare Disease Community
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
We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.
Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

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