Patient Worthy Contributor – Page 65

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

#SarcoidosisAwareness: Treatment

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

we may look different on the outside, but each one of us is unique on the inside, and that holds true more so when it comes to treatment options. I'm…

Consejos sobre cómo hacer que las inyecciones para su hijo no sean traumaticas

Post author:Patient Worthy Contributor
Post published:April 1, 2016
Post category:CAPS FCAS Neonatal onset multisystem inflammatory disease Rare Disease

Los tratamientos para enfermedades autoinflamatorias comúnmente requieren un paciente para recibir inyecciones debajo de la piel, lo que puede ser difícil si usted es el padre de un niño pequeño…

Rare Disease Meme – Simplicity

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

4 Way Too Common Narcolepsy Misconceptions

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

Epilepsy and Narcolepsy are related False. Epilepsy and Narcolepsy are NOT related. Sometimes, narcolepsy can be misdignosed as epilepsy. A narcoleptic experiencing symptoms of cataplexy can be mistaken for a seizure. But it…

Rare Disease Meme – You Know You’re Sick When

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

Orphan Eye Disease Drug News: When Your Eyes are Affected

Post author:Patient Worthy Contributor
Post published:March 31, 2016
Post category:Behçet's Intracranial Hypertension Rare Disease Stargardt Disease

Discovery Phase Drugs for Orphan Eye Diseases IVMED-100- 80- 90 are currently without generic drug names. They are under development for the treatment of orphan eye diseases by iVeena, LLC who has 6…

#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…

#SarcoidosisAwareness: Fact!

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

VTP-43742 enters Phase I for Ankylosing Spondylitis

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

Vitae Pharmaceuticals Announces Positive Top-Line Results From Initial Phase 1 Study of First-in-Class RORyt Inhibitor VTP-43742 in Autoimmune Disorders back in September. Vitae Pharmaceuticals, Inc. (“Vitae”) is developing VTP-43742 for…

Te diagnosticaron con una enfermedad rara: 4 cosas que puedes hacer si no hablas inglés

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

¿Y ahora qué? Llegaste al doctor para hacerte un chequeo y sales con un diagnostico que cambia tu vida entera. Sea, Distonía, Acromegalia, Angioedema Hereditario (AEH) o la enfermedad de…

Rare Disease Meme: Doing Your Best

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

if you give it your all, no one will be able to say that you didn't try hard enough. That applies across many possible situations but for rare disease patients,…

Rare Disease Meme – One Love

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

focus on the good and the good will be highlighted more often than not.

Rare Disease Meme: Open up to Hope

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

Allowing yourself to be hopeful, allowing yourself the opportunity to shape your future through the lens of hope, will make your rare disease fight that much easier. Fighting a rare…

#SarcoidosisAwareness: Inflammation

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

April is right around the corner, and for those living with or caring for someone diagnosed with Sarcoidosis, you know very well that it's going to be National Sarcoidosis Awareness Month.…

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.

7 Unusual Things I Did While on Lyme Treatment

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

Chronic Lyme is as the name indicates...chronic. But it definitely was at it's worst during tough antibiotic treatment. I was recently talking to my girlfriend who is currently going through…

Meme-a-Day Motivation – The Rare Disease Puzzle

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

Messages of hope relate to people in different ways. One may see it as an exact description of their life at the very moment they come across it, others may…

366 Talking Tips – People, Life, Rare Disease Community

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

Ever feel like you have 1,097,652,876,821 things to acknowledge and take care of and literally none of those things are something you actually want to do? Well let's take a huge…

Sangre y Tripas? Espere hasta que usted vea cómo esta artista holandésa lidia con la cistinosis

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

Rare Conect explica la vida de Annie Kwakkel que nació con cistinosis,una enfermedad genética que afecta aproxima a 1 en 100,00 a 200,000 recién nacidos en todo el mundo. Hoy…

366 Talking Tips – Attitudes

Post author:Patient Worthy Contributor
Post published:March 29, 2016
Post category:Rare Disease

Sometimes, when it comes to dealing with pressures out attitude toward others will inevitably fluctuate. This doesn't mean we mean to do it, it's just a reflection of our current…

Rare Disease Meme – Find Your Purpose

Post author:Patient Worthy Contributor
Post published:March 29, 2016
Post category:Rare Disease

As with other PW memes, this meme is aimed at getting you motivated, getting you pumped to find the silver lining in the earth shattering, life altering shit-storm that is…

La llamada a la acción de Ronnie para la investigación de la fibrosis quística #jointhecause

Post author:Patient Worthy Contributor
Post published:March 29, 2016
Post category:Cystic Fibrosis

CysticLife.org, una red en línea para la comunidad de la fibrosis quística (FQ), se está embarcando en un esfuerzo de recaudación de fondos para apoyar la investigación histórica impulsado por…

Consejos: Lee esto si no hablas otro idioma mas que el español

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

Yo soy hispanohablante de nacimiento pero me he convertido en una persona plurilingüe. Hablo Inglés, español y portugués y estoy aprendiendo a hablar francés ahora. La importancia de saber hablar más de un…

366 Talking Tips – Watch Your Mouth!

Rare Disease Meme – Pain and Sickness

#SarcoidosisAwareness: Treatment

Consejos sobre cómo hacer que las inyecciones para su hijo no sean traumaticas

Rare Disease Meme – Simplicity

4 Way Too Common Narcolepsy Misconceptions

Rare Disease Meme – You Know You’re Sick When

Orphan Eye Disease Drug News: When Your Eyes are Affected

#SarcoidosisAwareness: Cause

#SarcoidosisAwareness: Fact!

VTP-43742 enters Phase I for Ankylosing Spondylitis

Te diagnosticaron con una enfermedad rara: 4 cosas que puedes hacer si no hablas inglés

Rare Disease Meme: Doing Your Best

Rare Disease Meme – One Love

Rare Disease Meme: Open up to Hope

#SarcoidosisAwareness: Inflammation

Rare Disease Meme: Dealing With Disappointment

7 Unusual Things I Did While on Lyme Treatment

Meme-a-Day Motivation – The Rare Disease Puzzle

366 Talking Tips – People, Life, Rare Disease Community

Sangre y Tripas? Espere hasta que usted vea cómo esta artista holandésa lidia con la cistinosis

366 Talking Tips – Attitudes

Rare Disease Meme – Find Your Purpose

La llamada a la acción de Ronnie para la investigación de la fibrosis quística #jointhecause

Consejos: Lee esto si no hablas otro idioma mas que el español

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

Let’s Work Together!

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