rare disease – Page 199 – Patient Worthy

Rare Disease Meme – Silence and Reflection

Post author:Patient Worthy Contributor
Post published:April 1, 2016
Post category:Rare Disease

Rare Disease Meme – Habit

Post author:Patient Worthy Contributor
Post published:April 1, 2016
Post category:Rare Disease

366 Talking Tips – Watch Your Mouth!

Post author:Patient Worthy Contributor
Post published:April 1, 2016
Post category:Rare Disease

Rare Disease Meme – Pain and Sickness

Post author:Patient Worthy Contributor
Post published:April 1, 2016
Post category:Rare Disease

Rare Disease Meme – Simplicity

Post author:Patient Worthy Contributor
Post published:April 1, 2016
Post category:Rare Disease

Rare Disease Meme – You Know You’re Sick When

Post author:Patient Worthy Contributor
Post published:March 31, 2016
Post category:Rare Disease

#SarcoidosisAwareness: Cause

Post author:Patient Worthy Contributor
Post published:March 31, 2016
Post category:Rare Disease

RESEARCHERS BELIEVE SARCOIDOSIS IS ASSOCIATED WITH AN ABNORMAL IMMUNE SYSTEM RESPONSE, BUT WHAT TRIGGERS THIS RESPONSE IS NOT KNOWN. NOR DO DOCTORS KNOW WHETHER HEREDITY, ENVIRONMENT, OR LIFESTYLE AFFECTS THE…

Breaking News: New Hope for PAH Sufferers! Is This THE Cure?

Post author:Alisha Stone
Post published:March 31, 2016
Post category:pulmonary arterial hypertension Rare Disease

Congratulations to Accelmed, the equity investors, who backed SoniVie, a startup company based in Israel that's made a breakthrough treatment device for pulmonary arterial hypertension (PAH). Of course, we owe a…

Rare Disease Meme: Dealing With Disappointment

Post author:Patient Worthy Contributor
Post published:March 30, 2016
Post category:Rare Disease

never lose hope, for hope is an infinite feeling and disappointment is never everlasting.

Young Daughter with Cystinosis Inspires Mom

Post author:Erica Zahn
Post published:March 28, 2016
Post category:Cystinosis Rare Disease

Recently, a website called The Mighty invited its readers to write a letter to the rare disease or mental disorder that affected them or a member of their family. One mother…

Why Canada is the place to be for Cystic Fibrosis research.

¿Por qué es Canadá, el lugar para estar con FQ?

Post author:Patient Worthy Contributor
Post published:March 28, 2016
Post category:Cystic Fibrosis Rare Disease

Oh Canadá, la gente piensa que eres todo "por favor y gracias", y el jarabe de arce, pero conozco la verdad: Eres un luchador y esa lucha es más evidente…

10 Cosas el síndrome de Ehlers-Danlos me ha enseñado

Post author:Patient Worthy Contributor
Post published:March 25, 2016
Post category:Ehlers-Danlos Syndrome

10 cosas que he aprendido viviendo con el síndrome de Ehlers-Danlos 1. No es tan malo ser espontáneo Cuando era más joven yo tenía planes y listas para toda mi…

Conozca a Ronnie: ejerciendo su derecho heroico para inspirar a la Comunidad con Fibrosis Quística

Post author:Patient Worthy Contributor
Post published:March 24, 2016
Post category:Cystic Fibrosis Rare Disease

PatientWorthy está asociando con CysticLife.org para poner de relieve algunos de los miembros en su increíble comunidad! CysticLife.org surgió de un blog iniciado por paciente con FQ, Ronnie Sharpe, para…

The Crooked World of Life with Dystonia

Post author:Erica Zahn
Post published:March 23, 2016
Post category:Dystonia Rare Disease

In a segment on Oprah, dystonia patient Rogers Hartmann agreed to wear a camera on her head to show how she experiences the world. Bent at nearly a 90% angle, she frequently…

Bailaras de la felicidad cuando leas acerca de este muchachito!

Post author:Patient Worthy Contributor
Post published:March 22, 2016
Post category:Cystic Fibrosis Rare Disease

Alguna vez has tenido uno de esos días en los que simplemente no se sentía muy entusiasmado acerca de su vida? Tú sabes de qué estoy hablando. Los blues de…

Meme Monday – Focus on Positivism When Managing Your Rare Disease

Post author:Patient Worthy Contributor
Post published:March 21, 2016
Post category:Rare Disease

The following memes focus on keeping your happiness and badassery levels high! No matter what your struggles, whether it be dealing with a rare disease or fighting to create awareness…

366 Talking Tips

Post author:Patient Worthy Contributor
Post published:March 17, 2016
Post category:Rare Disease

no one likes it when you're telling your story or sharing an experience and someone jumps to a conclusion about what you're saying, who you are or what the point…

Rare Disease Mom’s Inspirational Memes – Shelly

Post author:Patient Worthy Contributor
Post published:March 16, 2016
Post category:Rare Disease

Every day we wake up, put on our shoes and meander through our daily activities. But for those living with a rare disease, meandering feels more like a daily fight…

Rare Disease Mom’s Inspirational Memes – Shelly

Post author:Patient Worthy Contributor
Post published:March 16, 2016
Post category:Rare Disease

From time to time, whenever we are going through a tough time, whether it be at our jobs, in our personal lives or in our relationships, we tend to forget…

Rare Disease Mom’s Inspirational Memes – Shelly

Post author:Patient Worthy Contributor
Post published:March 16, 2016
Post category:Rare Disease

With all the hype around Virtual Reality headsets, 3D Printing and all other sorts of awesome and weird tech created to "enhance" our already hyper connected lives, the meme above…

Rare Disease Mom’s Inspirational Memes – Shelly

Post author:Patient Worthy Contributor
Post published:March 15, 2016
Post category:Rare Disease

Shelly - Back at it again with the meme game! (if you've been living under a rock, click here to check out a kid made famous for wearing white vans...…

Rare Disease Mom’s inspirational memes – Shelly

Post author:Patient Worthy Contributor
Post published:March 15, 2016
Post category:Rare Disease

Shelly is a wife and mother of 2 amazing kids. She is also living with rare chronic conditions called Intracranial Hypertension and Primary Lateral Sclerosis among a myriad of…

A Guide to Rare Disease Organizations

Post author:Patient Worthy Contributor
Post published:March 14, 2016
Post category:Rare Disease

So for those of you out there living with a rare disease, I am sure that you are very well educated of all the government and non-government organizations that work…

Las perspectivas de pacientes son cruciales para la industria

Post author:Patient Worthy Contributor
Post published:March 9, 2016
Post category:Rare Disease

Patient Worthy asistió al foro anual organizada por la Fundación EveryLife este pasado martes en Washington, DC. Fue un taller de día completo acerca de por qué la incorporación de…

3 maneras este vídeo te puede enseñar cómo abogar por el IP

Post author:Patient Worthy Contributor
Post published:March 7, 2016
Post category:Primary Immunodeficiencies Rare Disease

He descubierto que a través de todo esto, mi hijo ha empezado a preguntar, '¿Cómo puedo ayudar? ¿Que puedo hacer?' En cierto modo, esas son las mismas cosas que le…

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Rare Disease Meme – Silence and Reflection

Rare Disease Meme – Habit

366 Talking Tips – Watch Your Mouth!

Rare Disease Meme – Pain and Sickness

Rare Disease Meme – Simplicity

Rare Disease Meme – You Know You’re Sick When

#SarcoidosisAwareness: Cause

Breaking News: New Hope for PAH Sufferers! Is This THE Cure?

Rare Disease Meme: Dealing With Disappointment

Young Daughter with Cystinosis Inspires Mom

¿Por qué es Canadá, el lugar para estar con FQ?

10 Cosas el síndrome de Ehlers-Danlos me ha enseñado

Conozca a Ronnie: ejerciendo su derecho heroico para inspirar a la Comunidad con Fibrosis Quística

The Crooked World of Life with Dystonia

Bailaras de la felicidad cuando leas acerca de este muchachito!

Meme Monday – Focus on Positivism When Managing Your Rare Disease

366 Talking Tips

Rare Disease Mom’s Inspirational Memes – Shelly

Rare Disease Mom’s Inspirational Memes – Shelly

Rare Disease Mom’s Inspirational Memes – Shelly

Rare Disease Mom’s Inspirational Memes – Shelly

Rare Disease Mom’s inspirational memes – Shelly

Las perspectivas de pacientes son cruciales para la industria

3 maneras este vídeo te puede enseñar cómo abogar por el IP

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

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