Rare Disease – Page 258 – Patient Worthy

Rare Disease Tip – Don’t Say These Five Things

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

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You’ll Never Have To Worry About Your Child Again (at School)!

Post author:Lady Kehveen Abernathy
Post published:May 10, 2016
Post category:Cystinosis Rare Disease

Raptor Pharmaceuticals, the makers of the cystinosis-treating medication known as PROCYSBI®, go above and beyond for the people they serve. If you have a child with cystinosis (or any chronic disease…

[Source: Pixabay.com]

This is What One of The Faces of Behcet’s Disease Looks Like

Post author:Ronald Ledsen
Post published:May 10, 2016
Post category:Behçet's Rare Disease

If you’re one of the people in the United States diagnosed with Behcet’s Disease, the odds are extremely high you’re the only person living with that disease in your city,…

Rare Mom: POTS and Spoons

Post author:Patient Worthy Contributor
Post published:May 10, 2016
Post category:Dysautonomia POTS Rare Disease

My journey with my 24 yr old daughter's illness began about two years ago. She was living away from home when her symptoms began. She wasn't able to continue to…

Pixabay

10 Tips for When Your Rare Child Grows Up

Post author:Rebekah
Post published:May 10, 2016
Post category:Rare Disease

Rare conditions are difficult on so many different levels. It’s hard to find someone who can relate, to find a physician who is familiar with the treatment options, and to…

366 Talking Tip – Remember Every Medical Professional

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

[Source: http://globallymealliance.org/press-releases/ ]

The Hadids and Lyme Disease

Post author:Alisha Stone
Post published:May 10, 2016
Post category:Lyme Disease Rare Disease

Dutch-American Reality TV star Yolanda Hadid, who is widely known for her supporting role on The Real Housewives of Beverly Hills, announced in the fall of 2015 that she was diagnosed…

McElspeth / Pixabay

Scholarships for People with Disabilities? Right Here!

Post author:Erica Zahn
Post published:May 10, 2016
Post category:Rare Disease

When you have a rare disease, your money goes to a lot of different things that people without health problems don't have to cover. Like medicine. Or therapy. Or hospitalizations. Or...…

366 Talking Tips – Communicate!

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

366 Talking Tips – Organize Your Team

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

source: Pixabay.com

Why You Should Care That Clint Eastwood Looks Like a Velociraptor

Post author:Lady Kehveen Abernathy
Post published:May 9, 2016
Post category:Cystinosis Rare Disease

Let's be real... it personally offends me that Raptor Pharmaceuticals' logo isn't a velociraptor. Like, that is a missed golden opportunity. I'm just saying... there are a lot of drugs out…

source: pixabay.com

Searching for a Future for Babies with Hunter Syndrome

Post author:Rebekah
Post published:May 9, 2016
Post category:Rare Disease

What are parents’ hopes for their children? Typically a happy, successful and long life. Children are often asked what they want to be when they grow up... but the growing…

Pixabay

How to Learn More About PI and Women

Post author:EmpatheticBadass
Post published:May 9, 2016
Post category:Primary Immunodeficiencies Rare Disease Timely

The Immune Deficiency Foundation (IDF) is a fabulous resource for anyone living with primary immunodeficiencies (PI). On May 12 at 8 PM Eastern Time, the IDF will host an informative…

Mother of Little Girl with Cystinosis Describes Being a Rare Mom

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

When my daughter was born on August 8, 2012 I became a rare mom. I wouldn't know I was until 15 months later, but my little girl was born with a…

That Time Glenn From The Walking Dead Found a Tick in His Pants

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

Conan O'Brien is just a big a Walking Dead fan as I am. If you're fan of the show as well, you know they are in the back woods of…

366 Talking Tips – Doctors are NOT mind readers

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

George's strawfie. Photo Courtesy of Shaun Williams

Young Woman with Cystic Fibrosis Making the Most of Her 2nd Chance at Life

Post author:Patient Worthy Contributor
Post published:May 9, 2016
Post category:Cystic Fibrosis Rare Disease

Little Miss Positive, Georgina Compton, is making the most of her second chance at life. Last year Georgina (George) Compton faced the very real prospect of dying at the age…

5 maneras fáciles de mejorar tu vida sexual viviendo con espondilitis anquilosante

Post author:Patient Worthy Contributor
Post published:May 9, 2016
Post category:Ankylosing Spondylitis Rare Disease

Es fácil para los jovenes de 20 años de edad bendecidos con cuerpos perfectos para aplicar fácilmente todas las posiciones sexuales locas y acrobáticas que Cosmopolitan te da. Sí colgando…

366 Talking Tips – Bad Habits

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

366 Talking Tips – Be on time

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

366 Talking Tips – You are in control

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

[Source: pixabay.com]

This is the Formidable Force Facing Down Behcet’s Disease

Post author:Ronald Ledsen
Post published:May 6, 2016
Post category:Behçet's Rare Disease

Sometimes, you just gotta be an unstoppable force... What do you do when you’ve been diagnosed with a disease like Behcet’s, something so rare that information and resources about it…

Editor’s Choice: 4 Awareness Months in 1, Rare Moms, Donald Trump and “This is Stupid”

Post author:Patient Worthy Contributor
Post published:May 6, 2016
Post category:Acromegaly Cushing Disease CVID Narcolepsy Rare Disease

Happy Almost Mother's Day Patient Worthians! This week is PACKED with announcements. First of all, it's Lyme disease Awareness Month, Cystinosis Awareness Month, Cystic Fibrosis Awareness Month, and Behcet's Awareness…

MEME – Keep the Fight Going

Post author:Patient Worthy Contributor
Post published:May 6, 2016
Post category:Rare Disease

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Do You Want to Be In the Know About BPD?

Post author:EmpatheticBadass
Post published:May 6, 2016
Post category:Bronchopulmonary Dysplasia Rare Disease Timely

Continuing medical education courses (or CMEs) are educational events designed to keep medical professionals up to date on the latest information in their fields. These professionals earn credits toward their ongoing…

Rare Disease Tip – Don’t Say These Five Things

You’ll Never Have To Worry About Your Child Again (at School)!

This is What One of The Faces of Behcet’s Disease Looks Like

Rare Mom: POTS and Spoons

10 Tips for When Your Rare Child Grows Up

366 Talking Tip – Remember Every Medical Professional

The Hadids and Lyme Disease

Scholarships for People with Disabilities? Right Here!

366 Talking Tips – Communicate!

366 Talking Tips – Organize Your Team

Why You Should Care That Clint Eastwood Looks Like a Velociraptor

Searching for a Future for Babies with Hunter Syndrome

How to Learn More About PI and Women

Mother of Little Girl with Cystinosis Describes Being a Rare Mom

That Time Glenn From The Walking Dead Found a Tick in His Pants

366 Talking Tips – Doctors are NOT mind readers

Young Woman with Cystic Fibrosis Making the Most of Her 2nd Chance at Life

5 maneras fáciles de mejorar tu vida sexual viviendo con espondilitis anquilosante

366 Talking Tips – Bad Habits

366 Talking Tips – Be on time

366 Talking Tips – You are in control

This is the Formidable Force Facing Down Behcet’s Disease

Editor’s Choice: 4 Awareness Months in 1, Rare Moms, Donald Trump and “This is Stupid”

MEME – Keep the Fight Going

Do You Want to Be In the Know About BPD?

Let’s Work Together!

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