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Daily Archives: June 15, 2016

Home » Archives for June 15, 2016
Millions Find Hope From a Celebrity IPF Survivor

Millions Find Hope From a Celebrity IPF Survivor

  • Post author:PW Blogger
  • Post published:June 15, 2016
  • Post category:IPF

The world was his audience, and everyone was watching. It was time to say "I have Idiopathic Pulmonary Fibrosis" If you are like most ordinary people, you are likely not familiar…

Continue Reading Millions Find Hope From a Celebrity IPF Survivor
Dr. Seuss Says Go See A Doctor for Men’s Health Week

Dr. Seuss Says Go See A Doctor for Men’s Health Week

  • Post author:Kristen Lord
  • Post published:June 15, 2016
  • Post category:Rare Disease

Men's Health Week is June 13th to 19th. It is to remind men to get a check up to help catch preventable illnesses, and encourage early detection and treatment of disease…

Continue Reading Dr. Seuss Says Go See A Doctor for Men’s Health Week
5 Tips to Help Manage Von Willebrand Disease

5 Tips to Help Manage Von Willebrand Disease

  • Post author:PW Blogger
  • Post published:June 15, 2016
  • Post category:Von Willebrand's Disease

5 Tips to Maintain a Healthy, Active Lifestyle While Living With Von Willebrand Disease Von Willebrand disease (vWD) is a rare bleeding disorder, found in about 1 percent of the…

Continue Reading 5 Tips to Help Manage Von Willebrand Disease
The Snowflake Disease: Myasthenia Gravis

The Snowflake Disease: Myasthenia Gravis

  • Post author:Kristen Lord
  • Post published:June 15, 2016
  • Post category:Myasthenia Gravis

Myasthenia Gravis (MG) is also referred to as the snowflake disease because every snowflake is different, much like how MG affects each person differently. Click here and to learn more, courtesy…

Continue Reading The Snowflake Disease: Myasthenia Gravis
Tell Your Doc You Want Your Newborn Screened for SCID

Tell Your Doc You Want Your Newborn Screened for SCID

  • Post author:PW Blogger
  • Post published:June 15, 2016
  • Post category:Rare Disease/SCID

Heather Smith suffered one of the greatest losses known to humanity: the death of her firstborn son, Brandon. He was seemingly healthy until he caught a cold at six months old,…

Continue Reading Tell Your Doc You Want Your Newborn Screened for SCID
Dysautonomia is an Amazing Challenge to Treat

Dysautonomia is an Amazing Challenge to Treat

  • Post author:PW Blogger
  • Post published:June 15, 2016
  • Post category:Dysautonomia/Rare Disease

Dysautonomia is not exactly a rare disease because it affects so many people. So, it's surprising that so little is known about this central nervous system disease, or what causes it.…

Continue Reading Dysautonomia is an Amazing Challenge to Treat
What Do We Want? Pain Relief! When Do We Want It? NOW!

What Do We Want? Pain Relief! When Do We Want It? NOW!

  • Post author:PW Blogger
  • Post published:June 15, 2016
  • Post category:Myasthenia Gravis/Rare Disease

Every day, millions of people wake up hoping that today will be a good day—that today, the pain will be at a bearable level. Myasthenia gravis (MG) patients know the high…

Continue Reading What Do We Want? Pain Relief! When Do We Want It? NOW!
Katie Nunca esperaba que esto esto en el Día del AEH

Katie Nunca esperaba que esto esto en el Día del AEH

  • Post author:Patient Worthy Contributor
  • Post published:June 15, 2016
  • Post category:HAE/Rare Disease

Después de seis años de diagnósticos erróneos y trituración de la decepción, un médico finalmente cuenta de que Katie tenía una rara condición genética en torno a una proteína llamada…

Continue Reading Katie Nunca esperaba que esto esto en el Día del AEH

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