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Daily Archives: July 24, 2017

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A Tyrosinemia Mom Turned Her Kids into Dietary Detectives
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A Tyrosinemia Mom Turned Her Kids into Dietary Detectives

  • Post author:Chloe Easterbrook
  • Post published:July 24, 2017
  • Post category:Rare Disease/Tyrosinemia

"Mom! What’s for dinner?" It’s a question that strikes fear in the hearts of matriarchs everywhere. Meats, breads, vegetables—you know the basics. Now add in a picky eater or someone…

Continue Reading A Tyrosinemia Mom Turned Her Kids into Dietary Detectives
New Imaging Technique for Gaucher Patients
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New Imaging Technique for Gaucher Patients

  • Post author:Athena Lee
  • Post published:July 24, 2017
  • Post category:Gaucher Disease/Rare Disease

Researchers have recently released some exciting news for Gaucher disease patients: a combination of two imaging techniques has been shown to better evaluate the risk of Gaucher patients developing bone…

Continue Reading New Imaging Technique for Gaucher Patients
New Device Helps Teen with Cystic Fibrosis Become an Athlete
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New Device Helps Teen with Cystic Fibrosis Become an Athlete

  • Post author:Al Pendleton
  • Post published:July 24, 2017
  • Post category:Cystic Fibrosis/Rare Disease

When you think of an inspiring athlete, who comes to mind? Jesse Owens, who went to the 1936 Olympics held in Nazi-controlled Germany and proceeded to win four gold medals…

Continue Reading New Device Helps Teen with Cystic Fibrosis Become an Athlete
Top Strategies for Helping Loved Ones with Parkinson’s Dementia
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Top Strategies for Helping Loved Ones with Parkinson’s Dementia

  • Post author:Minden Cantrell
  • Post published:July 24, 2017
  • Post category:Parkinson's Disease/Rare Disease

It started slowly. Mom left her purse at the grocery store. She forgot to turn off the stove and scorched the tea kettle. Frequently, she began a task, such as…

Continue Reading Top Strategies for Helping Loved Ones with Parkinson’s Dementia
Coming Soon: Phase III Trial For Inhaled Alpha-1 Antitrypsin Therapy
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Coming Soon: Phase III Trial For Inhaled Alpha-1 Antitrypsin Therapy

  • Post author:Athena Lee
  • Post published:July 24, 2017
  • Post category:Alpha-1 Antitrypsin Deficiency/Rare Disease

The pharmaceutical company, Kamada, has just submitted its proposed Phase III protocol for an inhaled alpha-1 antitrypsin therapy (inhaled AAT) to the U.S. Food and Drug Administration (FDA). This therapy…

Continue Reading Coming Soon: Phase III Trial For Inhaled Alpha-1 Antitrypsin Therapy
Young Man with Cystic Fibrosis Experiences Moped Misfortunes
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Young Man with Cystic Fibrosis Experiences Moped Misfortunes

  • Post author:Al Pendleton
  • Post published:July 24, 2017
  • Post category:Cystic Fibrosis/Rare Disease

The phrase “take advantage” is a bit strange. It can be quite innocuous with regards to using something. For example, there is nothing too bad about saying, “I’m going to…

Continue Reading Young Man with Cystic Fibrosis Experiences Moped Misfortunes
Birth Control Pills and Protein C Deficiency: A Deadly Combination
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Birth Control Pills and Protein C Deficiency: A Deadly Combination

  • Post author:Chloe Easterbrook
  • Post published:July 24, 2017
  • Post category:Protein C deficiency/Rare Disease

As a teenager, my acne and periods were agonizing! I have high school yearbook pictures that still make me cringe. After gallons of over-the-counter acne medications and pain relief, it…

Continue Reading Birth Control Pills and Protein C Deficiency: A Deadly Combination
Blindness from Choroidermia Didn’t Stop This Man from Running 12 Marathons
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Blindness from Choroidermia Didn’t Stop This Man from Running 12 Marathons

  • Post author:Octavia Walker
  • Post published:July 24, 2017
  • Post category:Choroideremia/Rare Disease

What happens when you imagine running a marathon? Unless you are an avid runner, the thought may make you laugh or even cringe. Running even one marathon may seem nearly…

Continue Reading Blindness from Choroidermia Didn’t Stop This Man from Running 12 Marathons

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Metastatic Breast Cancer: Navigating Grief


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Rethinking What It Means to Live With Acromegaly


Illustration of mentor program members


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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