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There is no cure: The worst words to hear and believe

There is no cure: The worst words to hear and believe

  • Post author:Tom Seaman
  • Post published:January 10, 2025
  • Post category:Dystonia

When I developed a neurological movement disorder called dystonia back in 2001, one of the first things I was told is that there is no cure. This terrified me. No…

Continue Reading There is no cure: The worst words to hear and believe
How One Woman Uses Her Own Grief to Help Others

How One Woman Uses Her Own Grief to Help Others

  • Post author:Kendall Mason
  • Post published:December 31, 2020
  • Post category:Cerebral Palsy

Grief is something that is difficult to go through alone, and this year has brought too much of it. Maya McNeary is no stranger to grief, as she recently lost…

Continue Reading How One Woman Uses Her Own Grief to Help Others
A Call for Hope in the Face of Rare Disease, Just in Time for Thanksgiving 
dh_creative / Pixabay

A Call for Hope in the Face of Rare Disease, Just in Time for Thanksgiving 

  • Post author:Jean Martell
  • Post published:November 22, 2018
  • Post category:Rare Disease

"Do you know what the world’s third most populated country is?" It's a question that Dr. Rafael Sousa Fernandes posed in an OpEd, wrote that made all of us here at Patient…

Continue Reading A Call for Hope in the Face of Rare Disease, Just in Time for Thanksgiving 

HOPE on the Green: A Hole-In-One for Batten Disease Research

  • Post author:Samuel Sachs
  • Post published:March 22, 2018
  • Post category:Batten Disease

April 9th is promising to be a beautiful day this year. By then, spring should be in full swing. For some people that phrase rings quite literally. With the return…

Continue Reading HOPE on the Green: A Hole-In-One for Batten Disease Research
El miedo, la frustración, la esperanza, aceptación: 4 luchas de un diagnóstico de ICV

El miedo, la frustración, la esperanza, aceptación: 4 luchas de un diagnóstico de ICV

  • Post author:Patient Worthy Contributor
  • Post published:September 5, 2016
  • Post category:CVID/Primary Immunodeficiencies

Kathy Antilla recuerda el momento en que escuchó a su hijo, Isaac, decir esas palabras que ella pensó que nunca oiría: "¡Mamá! ¡Mírame! Soy como un niño normal ahora." En…

Continue Reading El miedo, la frustración, la esperanza, aceptación: 4 luchas de un diagnóstico de ICV
3 Stops to Increasing Will Power – Hope, Faith, Courage

3 Stops to Increasing Will Power – Hope, Faith, Courage

  • Post author:Patient Worthy Contributor
  • Post published:May 11, 2016
  • Post category:Rare Disease

Continue Reading 3 Stops to Increasing Will Power – Hope, Faith, Courage

Fear, Frustration, Hope, Acceptance: 4 Struggles of a CVID Diagnosis

  • Post author:Patient Worthy Contributor
  • Post published:August 4, 2015
  • Post category:CVID/Primary Immunodeficiencies

Kathy Antilla recalls the moment she heard her son, Issac, say those words she thought she'd never hear: "Mom! Look at me! I'm just like a normal kid now." In…

Continue Reading Fear, Frustration, Hope, Acceptance: 4 Struggles of a CVID Diagnosis
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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