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A Mother Shares the Daily Challenges She Faces Caring for Her Special Needs Son
marvelmozhko / Pixabay

A Mother Shares the Daily Challenges She Faces Caring for Her Special Needs Son

  • Post author:Rose Duesterwald
  • Post published:March 16, 2021
  • Post category:Rare Disease

A person’s true feelings are often difficult to express during an interview. When asked a question by the interviewer there is no time to rehearse but only grasp at the…

Continue Reading A Mother Shares the Daily Challenges She Faces Caring for Her Special Needs Son
Macedonian Mother Successfully Advocates for World’s First Rare Disease Postage Stamp

Macedonian Mother Successfully Advocates for World’s First Rare Disease Postage Stamp

  • Post author:Jean Martell
  • Post published:July 8, 2019
  • Post category:Alport syndrome

This bit of 2017 news flew under the radar! But it's worth shining a spotlight! In 2017, Macedonia became the first country in the WORLD to issue a postage stamp…

Continue Reading Macedonian Mother Successfully Advocates for World’s First Rare Disease Postage Stamp
Grief, Obstacles, and Hope: A Mother’s Will to Create Choices
Source: Pixabay

Grief, Obstacles, and Hope: A Mother’s Will to Create Choices

  • Post author:Jean Martell
  • Post published:April 2, 2018
  • Post category:Batten Disease/Rare Disease

For so many in the rare disease community, courage isn't a just a virtue - it's a necessity. Many have to overcome odds and obstacles that most others don't have…

Continue Reading Grief, Obstacles, and Hope: A Mother’s Will to Create Choices
This Daughter Destroys the Wheelchair Stereotype With Letter to Mom

This Daughter Destroys the Wheelchair Stereotype With Letter to Mom

  • Post author:Farrah Fontaine
  • Post published:January 6, 2016
  • Post category:Dystonia/Rare Disease

Most girls rebel at the idea of ever becoming their mother. The passive aggressive judgments, the dancing in the grocery store, and of course, the embarrassing stories. As described by…

Continue Reading This Daughter Destroys the Wheelchair Stereotype With Letter to Mom
Finding Strength Together: Scott and Katie’s Journey with Advanced Kidney Cancerhttps://patientworthy.com/2026/01/20/finding-strength-together-scott-and-katies-journey-with-advanced-kidney-cancer/
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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