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Daily Archives: October 22, 2015

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Her Near Death Meant New Hope for 6-Year-Old Son

  • Post author:Kiki Jones
  • Post published:October 22, 2015
  • Post category:CAPS/Rare Disease

We all know that an early diagnosis can save lives. But, in an unexpected turn, this mother’s late diagnosis is what saved her son. RareConnect.org details the story of Malinda…

Continue Reading Her Near Death Meant New Hope for 6-Year-Old Son
A Promising New Acromegaly Drug Awaits FDA Blessing
source: pixabay.com

A Promising New Acromegaly Drug Awaits FDA Blessing

  • Post author:Ronald Ledsen
  • Post published:October 22, 2015
  • Post category:Acromegaly/Rare Disease

If you’re one of the small number of people living with acromegaly symptoms today (an estimated 60 out of every million people worldwide), we’ve got some good news for you.…

Continue Reading A Promising New Acromegaly Drug Awaits FDA Blessing
Here’s Something About Bubble Boy That You Never Knew

Here’s Something About Bubble Boy That You Never Knew

  • Post author:Ronald Ledsen
  • Post published:October 22, 2015
  • Post category:Primary Immunodeficiencies/Rare Disease/SCID

For those of us who grew up in the 1970s and 1980s, the phrase “Bubble Boy” zaps us right back to a sharp mental image that will always stick with…

Continue Reading Here’s Something About Bubble Boy That You Never Knew
The FDA Just Gained Big Brownie Points from Rare Disease Patients

The FDA Just Gained Big Brownie Points from Rare Disease Patients

  • Post author:Winnie Nash
  • Post published:October 22, 2015
  • Post category:Rare Disease

Earlier this year, the FDA took bold steps, launching them closer to efficient rare disease drug development. And now, the potential improvement for rare disease patients could be huge. Why?…

Continue Reading The FDA Just Gained Big Brownie Points from Rare Disease Patients
You Are Not Alone: Empowering the Advanced Kidney Cancer Community
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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