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Daily Archives: February 6, 2017

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Alveolar Capillary Dysplasia Almost Cost This Baby Her Life

Alveolar Capillary Dysplasia Almost Cost This Baby Her Life

  • Post author:Erica Zahn
  • Post published:February 6, 2017
  • Post category:Alveolar capillary dysplasia/Rare Disease

Alveolar capillary dysplasia, or ACD, is an exceptionally rare disease that seldom has a positive outcome. It begins in the womb when the alveoli capillaries in baby's lungs don't properly…

Continue Reading Alveolar Capillary Dysplasia Almost Cost This Baby Her Life
Treatment for HoFH Can Help Patients Live Longer, Healthier Lives
[Source: pixabay.com]

Treatment for HoFH Can Help Patients Live Longer, Healthier Lives

  • Post author:Erica Zahn
  • Post published:February 6, 2017
  • Post category:Homozygous Familial Hypercholesterolemia/Rare Disease

I just had my yearly physical and something weird (for me) popped up in the blood tests. My cholesterol level was up. Not through the roof, but enough to raise…

Continue Reading Treatment for HoFH Can Help Patients Live Longer, Healthier Lives
PHAT with Cushing’s Disease – This Woman Knows How to Rock It!
Source: https://pixabay.com/en/stairway-staircase-stairs-outdoors-828883/

PHAT with Cushing’s Disease – This Woman Knows How to Rock It!

  • Post author:Alisha Stone
  • Post published:February 6, 2017
  • Post category:Cushing Disease/Rare Disease

I’ve been fat before, but when I was back in 2007, I never felt PHAT—as in “pretty hot and tempting.” So when I read the post about a fabulous, young…

Continue Reading PHAT with Cushing’s Disease – This Woman Knows How to Rock It!
Looking Back: Allen’s Story Part 2- A Soldier’s Last Hope

Looking Back: Allen’s Story Part 2- A Soldier’s Last Hope

  • Post author:Rebekah
  • Post published:February 6, 2017
  • Post category:Ankylosing Spondylitis/Rare Disease

We want to celebrate our patient contributors and writers for their efforts in helping the rare community by bringing awareness, understanding and compassion to often neglected disease. The following article…

Continue Reading Looking Back: Allen’s Story Part 2- A Soldier’s Last Hope
4 Reasons My Mastiff Would Fail as a Mastocytosis Service Dog
Source: Pixabay.com

4 Reasons My Mastiff Would Fail as a Mastocytosis Service Dog

  • Post author:Sabina Kennedy
  • Post published:February 6, 2017
  • Post category:mastocytosis/Rare Disease

If you're a dog owner, you probably already know just how awesome dogs are. They fill your life with love, loyalty, fur, and plenty to smile about. For one little…

Continue Reading 4 Reasons My Mastiff Would Fail as a Mastocytosis Service Dog

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Metastatic Breast Cancer: Navigating Grief


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Rethinking What It Means to Live With Acromegaly


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The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

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