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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Orange You Glad People are Finally Speaking Out About CRPS?
November 2nd was Color the World Orange Day to help bring awareness to CRPS.

Orange You Glad People are Finally Speaking Out About CRPS?

Monday, November 2, was Color the World Orange Day, an initiative to help bring awareness to Complex Regional Pain Syndrome, also referred to as Reflex Sympathetic Dystrophy Syndrome (RDS). Color the World…

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The Best Revenge? Boy With CF Wins Iron Man’s Heart
A boy with Cystic Fibrosis (CF) gets a visit with Tony Stark.

The Best Revenge? Boy With CF Wins Iron Man’s Heart

Understanding of cystic fibrosis (CF) has, thankfully, come a long way from its earliest descriptions of children being “bewitched” or “hexed” because their sweat tasted of salt. And the life-expectancy of kids…

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How and Why You Should Get Big Money for HoFH Medication
The PAF is increasing its efforts to fund co-pays for those suffering from HoFH.

How and Why You Should Get Big Money for HoFH Medication

If you or your loved one is living with homozygous familial hypercholesterolemia (HoFH), you’re going to be thrilled with this news--and you deserve it, too! The Patient Advocate Foundation (PAF) just announced on November 2nd,…

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