Si su hijo tiene una enfermedad rara, lo que necesita saber sobre el abuso infantil médica
If your child has a rare disease, you need to know about this broken system

Si su hijo tiene una enfermedad rara, lo que necesita saber sobre el abuso infantil médica

Cuando eres es un padre preocupado con un hijo enfermo y los médicos no pueden decirle lo que está mal, o darle respuestas que no conducen a soluciones, ¿qué se…

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What’s in a Name? These Rare Disease Patients are Finding Out
What's in a name? Dysautonomia patients are finding out.

What’s in a Name? These Rare Disease Patients are Finding Out

Dysautonomia (dis-aw-tuh-noh-mee-uh or dis-auto-noh-meeuh) is surprisingly common. Around the world, an estimated 70 million people are impacted by autonomic nervous system disorders. And while some forms are fairly rare, there are…

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How This Young Woman’s Double D’s Are Changing the World
Disease and Depression. What this woman with EDS can teach all of us in the rare disease community.

How This Young Woman’s Double D’s Are Changing the World

Double D's. And not the good kind. Disease and Depression. All too often, after being diagnosed with a chronic illness, patients just give up. They withdraw. They stop trying. They…

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Editor’s Choice Weekend Roundup: It’s mid-#NERVEmber!
Editor's choice for 11.13.15

Editor’s Choice Weekend Roundup: It’s mid-#NERVEmber!

We are mid-#NERVEmber and gearing up for the Thanksgiving season! As we continue covering chronic illnesses like CRPS/RDS that can greatly effect the nerves, we are also highlighting some helpful tips and stats to…

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Big Arms, A Chronic Disease… Ladies, What More Could You Want?
Not even ankylosing spondyliltis (AS) can stop this athlete.

Big Arms, A Chronic Disease… Ladies, What More Could You Want?

When you're diagnosed with ankylosing spondyliltis (AS), the last thing you want to do is work out. Unless, of course, you're Nate Lewnes. College senior, Nate, may no longer be…

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