April 7, 2016 - Patient Worthy

366 talking tips – Background Checking Your Doc

Post author:Patient Worthy Contributor
Post published:April 7, 2016
Post category:Rare Disease

Addison’s Disease is a Pain in the You-Know-What

Post author:Erica Zahn
Post published:April 7, 2016
Post category:Addison's Disease Rare Disease

If you're like me, you nearly jump out of your skin when somebody makes a loud, unexpected noise nearby. Like the sneaky garbage truck that silently slides up to the…

366 Talking Tips – Sharing Your Treatment Goals

Post author:Patient Worthy Contributor
Post published:April 7, 2016
Post category:Rare Disease

366 Talking Tips – Stick With The Plan

Post author:Patient Worthy Contributor
Post published:April 7, 2016
Post category:Rare Disease

Obama+ A.C.A.+ Republicans = Brent Brown?

Post author:Patient Worthy Contributor
Post published:April 7, 2016
Post category:Rare Disease

Just when things are getting nastier and nastier on the campaign trails for both Republican and Democratic Presidential candidates, and much to the the dismay of his Far Right Republican…

CVID: Why is it Called Common When It’s so Rare?

Post author:Erica Zahn
Post published:April 7, 2016
Post category:CVID Rare Disease

Imagine, if you will, that you've just been diagnosed with common variable immune deficiency, or CVID. The doctor has answered your most basic questions, and now you're on your way…

366 Talking Tips – Be Honest About Your Comfort Level

Post author:Patient Worthy Contributor
Post published:April 7, 2016
Post category:Rare Disease

How to Increase Your Steps AND Raise $$ for Epilepsy!

Post author:EmpatheticBadass
Post published:April 7, 2016
Post category:Epilespy Rare Disease Timely

Lace up those walking shoes—even if you’re “walking” is really “wheeling” in your wheelchair and go call all your aunties, uncles, friends, and complete strangers for their pledge of support:…

366 Talking Tips – A Doctor’s Empathy

Post author:Patient Worthy Contributor
Post published:April 7, 2016
Post category:Rare Disease

Pixabay

This Is the Dog-Gone Best Way to Help CRPS

Post author:Erica Zahn
Post published:April 7, 2016
Post category:Complex Regional Pain Syndrome Rare Disease Timely

Are you available on May 14, 2016? Are you going to be in Jacksonville, Florida? If you answered a double "Yes!" get ready to make a difference in the lives of…

Manny and his family

Man with Cystic Fibrosis Races to Help Others – Part 2

Post author:Patient Worthy Contributor
Post published:April 7, 2016
Post category:Cystic Fibrosis Rare Disease

“We all get along and race together. The family life, the company, the team, the social life, we are very much in this together.” – Manny Goguen Manny Goguen, a…

Dead Poets Dream Big

Post author:Patient Worthy Contributor
Post published:April 7, 2016
Post category:Rare Disease

New Drug Down Under Helps Ease Pressure of PAH

Post author:James Ernest Cassady
Post published:April 7, 2016
Post category:pulmonary arterial hypertension Rare Disease Timely

In December 2015, the U.S. Food and Drug Administration approved Uptravi (selexipag) for the treatment of pulmonary arterial hypertension (or PAH). Now, others around the world will have the same…

Your Life Has a Purpose Past Your Rare Disease

Post author:Patient Worthy Contributor
Post published:April 7, 2016
Post category:Rare Disease

We're number one, and we want to be number one for you!

Everybody Wins a Trophy for Raising the Aplastic Anemia Research Big Bucks

Post author:Erica Zahn
Post published:April 7, 2016
Post category:Aplastic anemia Rare Disease

A recent event held in Houston, Texas, raised over $27,000 to help fund research and raise awareness about bone marrow cancer. The Frontier Fiesta 5K Run, now in its third…

#SarcoidosisAwareness

Post author:Patient Worthy Contributor
Post published:April 7, 2016
Post category:Rare Disease

Este Shake Anti-inflamatorio sabe a helado

Post author:Patient Worthy Contributor
Post published:April 7, 2016
Post category:Rare Disease

Años antes de que me diagnosticaron la enfermedad de Lyme en etapa tardía crónica, que habían sido diagnosticados erróneamente con una enfermedad en el pecho, los ganglios linfáticos crónicamente inflamados,…

Get Involved

366 talking tips – Background Checking Your Doc

Addison’s Disease is a Pain in the You-Know-What

366 Talking Tips – Sharing Your Treatment Goals

366 Talking Tips – Stick With The Plan

Obama+ A.C.A.+ Republicans = Brent Brown?

CVID: Why is it Called Common When It’s so Rare?

366 Talking Tips – Be Honest About Your Comfort Level

How to Increase Your Steps AND Raise $$ for Epilepsy!

366 Talking Tips – A Doctor’s Empathy

This Is the Dog-Gone Best Way to Help CRPS

Man with Cystic Fibrosis Races to Help Others – Part 2

Dead Poets Dream Big

New Drug Down Under Helps Ease Pressure of PAH

Your Life Has a Purpose Past Your Rare Disease

Everybody Wins a Trophy for Raising the Aplastic Anemia Research Big Bucks

#SarcoidosisAwareness

Este Shake Anti-inflamatorio sabe a helado

Metastatic Breast Cancer: Navigating Grief

Rethinking What It Means to Live With Acromegaly

The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

Get Involved

Let’s Work Together!

Keep Up to Date

Learn More