February 28, 2017 – Patient Worthy

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Pemphigus and Pemphigoid: A Rare Disease Recipe for Pain

Post author:Patient Worthy Contributor
Post published:February 28, 2017
Post category:Pemphigus and pemphigoid Rare Disease

During Rare Disease Week, I have met the most amazing patients and advocates whose personal experiences have kept me motivated to continue spreading awareness not just for my disease, but…

[Source: New Old Stock]

Big Dog Helps Little Girl Make Strides Against Morquio Syndrome

Post author:Ronald Ledsen
Post published:February 28, 2017
Post category:MPS IV (Morquio syndrome)Rare Disease

As humanity collectively slinks into the cold, dark days of winter, we could all use something to warm us up… or at least bring a small slice of sunshine. Well,…

Source: pixabay

The Uncertainties of the Affordable Care Act and Your Rare Disease Coverage

Post author:Patient Worthy Contributor
Post published:February 28, 2017
Post category:Dysautonomia Lyme Disease POTS Rare Disease

With the new administration, questions of coverage, the ACA and how it effects those of us affected by rare disease have been causing major concern. Today at the 2017 Legislative…

[Source: pixabay.com]

How to Affect Myelodysplastic Syndrome with Vitamin C

Post author:Sabina Kennedy
Post published:February 28, 2017
Post category:Myelodysplastic syndromes

I’m a skeptic-to-enraged lunatic when it comes to outlandish health claims. I land more squarely in the “enraged” arena when said outlandish claims play on the fears of people trying…

This Cystic Fibrosis Documentary Will Bring You to Tears

Post author:Patient Worthy Contributor
Post published:February 28, 2017
Post category:Cystic Fibrosis Rare Disease

Last night, I attended a documentary screening of "Up For Air" in Washington, DC for Rare Disease Week (or #RareDC2017, #RareDiseaseDay). It follows 53-year-old Jerry Cahill over the course of…