Rare Disease – Page 275 – Patient Worthy

366 Talking Tips

Post author:Patient Worthy Contributor
Post published:March 23, 2016
Post category:Rare Disease

Today's talking tip meme makes us take a step back and think about how we approach compassion. It's not easy to be compassionate toward others if we don't show ourselves compassion when…

Awesome Doctors, Family Medicine and Rare Disease

Post author:Patient Worthy Contributor
Post published:March 22, 2016
Post category:Behçet's Rare Disease

Socially active, super smart and patient worthy Dr. Kim Becher we applaud you! Patient Worthy found an awesome blog sponsored by the American Academy of Family Physicians (AAFP), Fresh Perspectives:…

Sponsored Research of Pharmacodynamic Biomarkers

Wait, What is the FDA Doing with $2 Million?

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

Post Rare Disease Day 2016 the FDA's Office of Special Medical Programs announced a new program that would work to provide funding to patient advocacy groups and other organizations who were studying…

My Least Favorite Sentence EVER

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

How celiac disease, vestibular neuritis, and cervical dystonia have ruined my answer to the most common way to greet people in America. “Hello, how are you?” Is it okay to say…

Don’t Be A Dunce, Learn Something New About Narcolepsy

Post author:Lady Kehveen Abernathy
Post published:March 22, 2016
Post category:Narcolepsy Rare Disease

Did you know there are dos (that's Spanish for "two") forms of narcolepsy? Yep! Type 1. Type 2. Very similar in truth. Both involve excessive sleepiness. What distinguishes the types is…

Source: www.julieflygare.com

This Amazing Woman Is The New Face Of Narcolepsy

Post author:Erica Zahn
Post published:March 22, 2016
Post category:Narcolepsy Rare Disease

When Julie Flygare was diagnosed with narcolepsy eight years ago, she had no idea what would transpire in her life as a result. She realized that very few people understood…

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…

Get Inside the Mind of a Narcoleptic 20-something

Post author:James Ernest Cassady
Post published:March 21, 2016
Post category:Narcolepsy Rare Disease

"Paralysis" "Convulsions" "Bizarre" "Frightening" "Anxiety" "Depression" These are just a few of the words you'll find on this narcolepsy infographic, posted by Tumblr user needlenightnemesis. If you don't live with…

How to Detox From Chronic Lyme Treatment

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

Feeling crappy because of Lyme is the WORST. Then, feeling crappy from Lyme TREATMENT is scary. You think you know your Lyme, but then BAM! Treatment gives you random symptoms, from…

$3 Billion in Wasted Cancer Meds: Who’s to Blame?

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

When my cat isn't distracting me with his exotic dance routine (he's just trying to get through catnip tasting school okay!? don't judge!) I do research on subjects that help…

Amazing Boy Unites Community To Fight Aplastic Anemia

Post author:James Ernest Cassady
Post published:March 21, 2016
Post category:Aplastic anemia Rare Disease

I've got to give a HUGE shout out to the folks at Larson Heights Elementary in Moses Lake, Washington! One of their students, Michael Owen, was diagnosed with aplastic anemia…

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…

¿Qué le dirías a este individuo con fibrosis quística?

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

En el sitio web fabuloso de Cystic Fibrosis Lifestyle Foundation, el blogger de FQ Brian Callanan ha emitido una llamada a la acción. Él quiere saber de todos ustedes si…

Can You Guess What This Mom With EDS Realized?

Post author:Ronald Ledsen
Post published:March 18, 2016
Post category:Ehlers-Danlos Syndrome Rare Disease

Here’s a heartbreaking story out of the UK that reminds us never to take anything in life for granted. A young mother with two children, Saffron Taylor, was recently diagnosed with…

Editor’s Choice: Rare Disease Day, Art and Shocking Videos

Post author:Patient Worthy Contributor
Post published:March 18, 2016
Post category:Narcolepsy primary ciliary dyskinesia Rare Disease

Happy Day-After-St.Patty's-Day! As you all know, Rare Disease Week was at the very beginning of March and we have some awesome highlights for you below. One about a young artist…

A Letter to My Body

Post author:Patient Worthy Contributor
Post published:March 18, 2016
Post category:Intracranial Hypertension Rare Disease

Dear Body, I thought it was past time for me to write this letter to you. You see, I owe you an apology. I spend most days considering how you've…

The 2016 Time for Lyme Gala is in TWO weeks!

Post author:Patient Worthy Contributor
Post published:March 18, 2016
Post category:Lyme Disease Rare Disease

Mark your calendars: The Global Lyme Alliance is hosting the 2016 Time for Lyme Gala on April 2, 2016. Where: Hyatt Regency Greenwich When: April 2, 2016, 6:30 pm-12 am (Midnight)…

Living With Aplastic Anemia In A Time of War

Post author:James Ernest Cassady
Post published:March 18, 2016
Post category:Aplastic anemia Rare Disease

Abdulatif al-Jasem's family was fleeing the violence in Syria when the seven-year-old began bleeding heavily. Just as they were about to make their escape on a smuggler's boat, the other…

How One Family’s Dream Vacation Turns Into a Castleman’s Nightmare

Post author:Ronald Ledsen
Post published:March 18, 2016
Post category:Castleman Disease Rare Disease

When British father Matthew Parkes took his wife Pamela and daughter Sophia on an anniversary holiday to Majorca, Spain last year, he got much more than he'd ever bargained for.…

Lo qué usted necesita saber sobre este nuevo tratamiento para la fibrosis quística

Post author:Patient Worthy Contributor
Post published:March 18, 2016
Post category:Cystic Fibrosis Rare Disease

Bueno, la gente en la Comunidad de la fibrosis quística, escuchen! Un nuevo tratamiento dirigido para la fibrosis quística (FQ) puede estar en el horizonte antes vs después, y estoy…

Why Being Mixed Race Sucks When You Have Amyloidosis

Post author:Ronald Ledsen
Post published:March 17, 2016
Post category:Amyloidosis Rare Disease

If you’re reading this I need to ask you an urgent question. Are you mixed race? Specifically, part Filipino and part European? Yes, I know, it’s none of my damn…

Courage Under Fire: Why This Mainstream Mom is My Narcolepsy Hero!

Post author:Alisha Stone
Post published:March 17, 2016
Post category:Narcolepsy Rare Disease

I’ve gotta tell ya that I’m pretty damn impressed with a gal named Joyce. I first heard about her arduous journey with narcolepsy after reading her story on the Narcolepsy Network…

366 Talking Tips

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

Ever wonder what the most annoying things doctors can do? just jump right in to give you advice without asking you some background information I mean c'mon... As a patient,…

He Ain’t Heavy, He’s My Brother

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

What makes a young boy’s eyes light up? What makes him shuffle his feet with excitement or smile from ear to ear? One would think it would be a new…

366 Talking Tips

Awesome Doctors, Family Medicine and Rare Disease

Sponsored Research of Pharmacodynamic Biomarkers

Wait, What is the FDA Doing with $2 Million?

My Least Favorite Sentence EVER

Don’t Be A Dunce, Learn Something New About Narcolepsy

This Amazing Woman Is The New Face Of Narcolepsy

Bailaras de la felicidad cuando leas acerca de este muchachito!

Get Inside the Mind of a Narcoleptic 20-something

How to Detox From Chronic Lyme Treatment

$3 Billion in Wasted Cancer Meds: Who’s to Blame?

Amazing Boy Unites Community To Fight Aplastic Anemia

Meme Monday – Focus on Positivism When Managing Your Rare Disease

¿Qué le dirías a este individuo con fibrosis quística?

Can You Guess What This Mom With EDS Realized?

Editor’s Choice: Rare Disease Day, Art and Shocking Videos

A Letter to My Body

The 2016 Time for Lyme Gala is in TWO weeks!

Living With Aplastic Anemia In A Time of War

How One Family’s Dream Vacation Turns Into a Castleman’s Nightmare

Lo qué usted necesita saber sobre este nuevo tratamiento para la fibrosis quística

Why Being Mixed Race Sucks When You Have Amyloidosis

Courage Under Fire: Why This Mainstream Mom is My Narcolepsy Hero!

366 Talking Tips

He Ain’t Heavy, He’s My Brother

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