nueromuscular disease – Patient Worthy

I was a Rare Disease Baby, Now a Rare Disease Adult

Post author:Angela Davis
Post published:December 11, 2017
Post category:Stiff-Person Syndrome

I almost died at birth and had to wear metal leg braces and shoes for the first two years of my life, an attempt to straighten my inward facing rigid…

How You Can Help Rare Disease Patients Now from a SPS Warrior

Post author:Patient Worthy Contributor
Post published:May 26, 2017
Post category:Rare Disease Stiff-Person Syndrome

Rare Disease patients tend to be tremendously aware of every aspect of our lives; our under-treated diseases, our lack of social support and our own coping mechanisms. We need more…

We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.

Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

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