Editor’s Choice: Sickle Cell Score and World PI Week Pets

Happy Friday Patient Worthians! Did you know it was World PI Week this week? We have a post on the role pets have with PI. We also have a story on a…

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Familial Dysautonomia Caregiver Shocks the Inclusion Debate
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Familial Dysautonomia Caregiver Shocks the Inclusion Debate

My girlfriend called me the other day—crying hysterically. I couldn’t understand her much, but it didn’t matter. I know she’s raising her first-born child with familial dysautonomia (FD). Problems related to…

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Editor’s Choice: Overcoming Obstacles and Fulfilling Dreams with Rare Disease

Happy Friday Patient Worthians! PW Contributor Tom Seaman talks about what it's like to overcome the mental toll of your rare disease diagnosis. Another PW Contributor suffering from TN, dysautonomia and…

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Editor’s Choice: Suddenly Sleepy and Beautifully Broken

Welcome back to Editor's Choice! This week we have an interesting take on Parkinson's treatment. We also have an empowering article from one of PW's rare disease contributors. We are all feeling the…

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

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…

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Esta mamá honesta no quiere que usted para avergonzarse de su enfermedad rara

Kathryn es una esposa y madre de dos niños increíbles. Ella vive con síndrome de fiebre periódica idiopática indiferenciada, urticaria inducida por el frío y síndrome de taquicardia postural (POTS).…

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Un postre fácil y saludable que usted puede comer con enfermedad crónica
Finally! Healthy and easy dessert you can eat with chronic illness.

Un postre fácil y saludable que usted puede comer con enfermedad crónica

Me encanta postres. Su "destacado" escrito al revés. Sólo hay algo para aliviar el de ser capaz de hundir sus dientes en algo dulce. Pero cuando se les diagnostica una…

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Editor’s Choice: Confessions of Patients with Rare Disease

Welcome back to Editor's Choice Patient Worthians! This week we have a story on some awesome rockers that are helping out the POTS community. We also have a sweet TEDx talk…

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Las 6 emociones que tendras cuando se te es diagnosticado con una enfermedad neurologica
The emotions that come along with a chronic neurological illness can be a whirlwind.

Las 6 emociones que tendras cuando se te es diagnosticado con una enfermedad neurologica

Ser diagnosticado con una enfermedad neurológica crónica puede ser vindicación después de años de incontables visitas de especialistas, pruebas e investigaciones. Sin embargo, existe todavía un tipo de período de…

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Dysautonomia Chick Storming Capitol Hill is the Best News Ever
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Dysautonomia Chick Storming Capitol Hill is the Best News Ever

It has been said that there is strength in numbers, and we are much stronger together! That’s probably why I connected with Shira Strongin, a young teen who lives with…

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Si 3 millones de estadounidenses tienen POTS, ¿por qué es tan mal entendido?
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Si 3 millones de estadounidenses tienen POTS, ¿por qué es tan mal entendido?

Hanna Gully era una niña con un sueño: que un día iba a viajar por el mundo, y se atreven a hacer todas las cosas que había establecido su mente…

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