Meme: You Got This

• Post author:Rebekah
• Post published:November 9, 2016
• Post category:Rare Disease

It doesn't matter what other people see, what matters is how tough YOU know you are. Your inner strength has gotten you through a lot and will continue to!

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How These Parents Create Outreach for Rare Glut1 Community

• Post author:Sabina Kennedy
• Post published:November 9, 2016
• Post category:GLUT1 DS/Rare Disease

Being a parent is tough. We never know if we’re on the right track. Too many thoughts of self-criticism come to mind: Am I doing this right? Do I practice…

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It’s Amazing How Primary Myelofibrosis Can Run You Over

• Post author:Erica Zahn
• Post published:November 9, 2016
• Post category:primary myelofibrosis/Rare Disease

Primary myelofibrosis is one in a group of rare diseases called myeloproliferative neoplasms, or MPNs. It is characterized by an overproduction of one of the three components of blood: red cells,…

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Can You Imagine Waking Up in the Hospital to this News?

• Post author:PW Blogger
• Post published:November 9, 2016
• Post category:Lennox-Gastaut syndrome/Rare Disease

I woke up in an emergency room surrounded by nurses, doctors, and tearful friends. I had no idea how I got there or how long I had been there. I…

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Breakthrough: More Secrets of Glut1 DS Revealed

• Post author:James Ernest Cassady
• Post published:November 9, 2016
• Post category:GLUT1 DS

As if there wasn't enough about Glut1 deficiency to be frustrated with, scientists are now saying there are more symptoms to the condition than they were originally aware of. In…

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If Epidermolysis Bullosa is So Terrible, How is One Mom So Happy?

• Post author:Sabina Kennedy
• Post published:November 9, 2016
• Post category:Epidermolysis Bullosa/Rare Disease

Life is one wild ride, isn’t it? The greatest surprises of life may be just around the corner. My life was changed by one little red radio flyer wagon. An…

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What You Need to Learn About a Disease No One Wants to Talk About

• Post author:Erica Zahn
• Post published:November 9, 2016
• Post category:pediatric ulcerative colitis/Rare Disease

Pediatric ulcerative colitis is an inflammation of the lining of the colon and rectum. The inflammation can wear away the lining, causing ulcers to form, and patients suffer from chronic…

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How Sweet It Isn’t: One Little Girl’s Struggle with GLUT1

• Post author:James Ernest Cassady
• Post published:November 9, 2016
• Post category:GLUT1 DS/Rare Disease

Fields Taylor was 15 weeks old when she had her first seizure. They continued for months as doctors were unable to determine what was wrong. Then another seizure led to more tests…

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My opinion sobre Behcet’s. Estaras de acuerdo?

• Post author:Patient Worthy Contributor
• Post published:November 9, 2016
• Post category:Behçet's/Rare Disease

¿No te odio, haga clic en el cebo? ¡Hago! Mientras que la búsqueda de información real acerca de la Enfermedad de Behcet - porque, lo necesitamos - me encontré con…

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