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Hermansky-Pudlak syndrome

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Living Life As a Rare Patient and Individual

Living Life As a Rare Patient and Individual

  • Post author:[email protected]
  • Post published:October 8, 2019
  • Post category:Hermansky-Pudlak syndrome/Pulmonary fibrosis

Living life as a rare individual and patient has its challenges day to day. The best feeling in the world, though, is having support:  being around people who know what…

Continue Reading Living Life As a Rare Patient and Individual
A Rare Story Following HPS Awareness Day

A Rare Story Following HPS Awareness Day

  • Post author:[email protected]
  • Post published:April 8, 2019
  • Post category:Hermansky-Pudlak syndrome

You will never forget the day you are told your child has a one in a million rare disorder: the overwhelming fear of isolation, fear of what the future holds…

Continue Reading A Rare Story Following HPS Awareness Day
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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