Rare Disease – Page 269 – Patient Worthy

366 Talking Tips – Kindness

Post author:Patient Worthy Contributor
Post published:April 12, 2016
Post category:Rare Disease

4 Times Grey’s Anatomy Featured Rare Disease and We Loved it

Post author:Patient Worthy Contributor
Post published:April 11, 2016
Post category:Rare Disease

Eleven seasons have come and gone (we are mid 12 now) and I remain a hard core Grey's Anatomy fan. I remember back in college for a public speaking class I…

Acromegaly, Goliath and the Book that Inspired Me

Post author:Patient Worthy Contributor
Post published:April 11, 2016
Post category:Acromegaly Rare Disease

I am a huge Malcolm Gladwell fan. Published in 2013, Gladwell's David and Goliath: Underdogs, Misfits, and the Art of Battling Giants speaks to those who are at a cross roads, feeling defeated,…

Meme Motivation – Prepare For a Wild Ride

Post author:Patient Worthy Contributor
Post published:April 11, 2016
Post category:Rare Disease

Monday Rare Disease PSA – It’s NOT all in my head

Post author:Patient Worthy Contributor
Post published:April 11, 2016
Post category:Rare Disease

When it comes to getting a rare disease diagnosis, not one person will ever tell it you it was a walk in the park. As Kathryn (a gold level patient…

Meme – The Solo Path is Full of People

Post author:Patient Worthy Contributor
Post published:April 11, 2016
Post category:Rare Disease

By Any Other Name Would Your Rare Disease Still Suck?

Post author:Lady Kehveen Abernathy
Post published:April 11, 2016
Post category:Castleman Disease Familial Mediterranean Fever Rare Disease

Never judge a book by it's cover, or a disease by it's name. Familial Mediterranean fever is not a chronic longing or fiery passion for the beaches along the coast of…

366 Talking Tips – When Doctors Diagnose Stress

Post author:Patient Worthy Contributor
Post published:April 11, 2016
Post category:Rare Disease

Meme – Five Sarcoidosis Facts

Post author:Patient Worthy Contributor
Post published:April 11, 2016
Post category:Rare Disease

It’s Not In The Blood, It’s In The Bone Marrow

Post author:Lady Kehveen Abernathy
Post published:April 11, 2016
Post category:Aplastic anemia Rare Disease

Aplastic anemia. What is that? In simple terms, it's a condition that causes your body to cease making an adequate number of blood cells. It's a very serious condition, and…

5 maneras de hacer 2016 un año mejor #NewYearNewYou

Post author:Patient Worthy Contributor
Post published:April 11, 2016
Post category:Lyme Disease Rare Disease

Alexis Rosen fue diagnosticado con la enfermedad de Lyme crónica después de mucha confusión y mes de la búsqueda de respuestas. Ha comenzado ya la terapia con antibióticos IV. Después…

Meme Motivation – The Strength is in YOUR hands

Post author:Patient Worthy Contributor
Post published:April 10, 2016
Post category:Rare Disease

Meme Motivation – Sarcoidosis Biker

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

Rare Disease Battles – Why Subliminal Activism Matters

Post author:Patient Worthy Contributor
Post published:April 8, 2016
Post category:Rare Disease

Raising Awareness...Activism...Advocacy... Those are just some of the words we use to demand action from anyone whether it be world leaders, industries, friends or family. Every day we engage in…

366 Talking Tips – Doctor’s Promises

Post author:Patient Worthy Contributor
Post published:April 8, 2016
Post category:Rare Disease

Editor’s Choice: Man Races to Breathe, Odd Lymie Behaviors and Narcolepsy Video Series

Post author:Patient Worthy Contributor
Post published:April 8, 2016
Post category:Cystic Fibrosis Lyme Disease Narcolepsy pulmonary arterial hypertension Rare Disease

Happy Friday Patient Worthians! This week we are highlighting a story of a man with cystic fibrosis, racing to breathe and spread awareness of exercise therapy for those with CF.…

Meme Motivation – Make The Choice to Act!

Post author:Patient Worthy Contributor
Post published:April 8, 2016
Post category:Rare Disease

Check Out This CVID Video If You Need a Quick Info Hit

Post author:Ronald Ledsen
Post published:April 8, 2016
Post category:CVID Primary Immunodeficiencies Rare Disease

Looking for a good, concise description of common variable immune deficiency (CVID)? You could do a lot worse than to watch this video from the Children’s Hospital of Pittsburgh of…

Meme Motivation – Live Free

Post author:Patient Worthy Contributor
Post published:April 8, 2016
Post category:Rare Disease

What Do YOU Know About Myasthenia Gravis?

Post author:Erica Zahn
Post published:April 8, 2016
Post category:Myasthenia Gravis Rare Disease

Have you ever thought about blinking? Right now, try not to blink for as long as you can... You blinked, didn't you? That's the function of an involuntary muscle. You…

Remember Me?

Post author:Patient Worthy Contributor
Post published:April 8, 2016
Post category:Dysautonomia POTS Rare Disease

Remember me? I’m the girl with big ambitions who refuses to allow my illnesses to get in the way. Within two months of being diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS),…

Meme Motivation – Lines and Borders Need Not Contain You

Post author:Patient Worthy Contributor
Post published:April 8, 2016
Post category:Rare Disease

Do You Want to Meet Others Living With Sjögren’s Syndrome?

Post author:Ronald Ledsen
Post published:April 8, 2016
Post category:Rare Disease Sjogren's Syndrome Timely

Are you one of the estimated four million people in the U.S. living with Sjögren’s syndrome? Are you going to be in the Seattle area between April 8th and 9th?…

Reciviendo mi primer diagnóstico de una enfermedad rara (Video Serie)

Post author:Patient Worthy Contributor
Post published:April 8, 2016
Post category:CAPS Rare Disease

Bienvenidos a la primera de muchos articulos relacionados con la Video Serie de Patient Worthy! Tuvimos el placer de entrevistar al contribuyente de PatientWorthy Kathryn Ferguson, una madre y una…

366 talking tips – Background Checking Your Doc

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

366 Talking Tips – Kindness

4 Times Grey’s Anatomy Featured Rare Disease and We Loved it

Acromegaly, Goliath and the Book that Inspired Me

Meme Motivation – Prepare For a Wild Ride

Monday Rare Disease PSA – It’s NOT all in my head

Meme – The Solo Path is Full of People

By Any Other Name Would Your Rare Disease Still Suck?

366 Talking Tips – When Doctors Diagnose Stress

Meme – Five Sarcoidosis Facts

It’s Not In The Blood, It’s In The Bone Marrow

5 maneras de hacer 2016 un año mejor #NewYearNewYou

Meme Motivation – The Strength is in YOUR hands

Meme Motivation – Sarcoidosis Biker

Rare Disease Battles – Why Subliminal Activism Matters

366 Talking Tips – Doctor’s Promises

Editor’s Choice: Man Races to Breathe, Odd Lymie Behaviors and Narcolepsy Video Series

Meme Motivation – Make The Choice to Act!

Check Out This CVID Video If You Need a Quick Info Hit

Meme Motivation – Live Free

What Do YOU Know About Myasthenia Gravis?

Remember Me?

Meme Motivation – Lines and Borders Need Not Contain You

Do You Want to Meet Others Living With Sjögren’s Syndrome?

Reciviendo mi primer diagnóstico de una enfermedad rara (Video Serie)

366 talking tips – Background Checking Your Doc

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