rare disease – Page 201 – Patient Worthy

There is Strength in Going Unrecognized

Post author:Patient Worthy Contributor
Post published:May 13, 2016
Post category:Rare Disease

This 13-Year-Old Girl Will Make You Rethink CVID

Post author:Erica Zahn
Post published:May 13, 2016
Post category:CVID Rare Disease

Amber Blair, a brave 13-year-old girl from Chowchilla, California, was born with common variable immune deficiency (CVID), but she wasn’t properly diagnosed until years later, according to Chowchilla News. She…

Rare Disease Battle Meme

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

Meme Motivation – Let Your Inner Emoji Shine

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

MemeInfo – CVID

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

Students Raise Money, Awareness, and Empathy for Rare Diseases

Post author:Erica Zahn
Post published:May 11, 2016
Post category:Rare Disease Tyrosinemia

Students at North Carolina State aren’t letting the grass grow beneath their feet, knowing their feet can make a difference in a sick child’s life. At a recent dance marathon…

Meme Motivation – Be Proud of Your Scars

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

If Happiness Is Being Mother to Twins, Here’s How AML and Mastocytosis Are Conjoined!

Post author:Alisha Stone
Post published:May 11, 2016
Post category:mastocytosis Rare Disease

What’s it going to take before an effective treatment gets approved by the FDA for acute and aggressive mastocytosis? Well, hopefully the mastocytosis community won’t have to wait too long! In…

3 Stops to Increasing Will Power – Hope, Faith, Courage

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

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Found! The Missing Link in Aplastic Anemia Treatments

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

Does this word "Musashi-2" mean anything to you? If you suffer from aplastic anemia, it may be the most important phrase you'll ever learn. Scientists are very familiar with Musashi-2 and…

12 minutos de inspiración – batallando el ICV

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

Todos nos dirigimos a YouTube aquí y allá; para una buena risa, un pequeño segmento informativo sobre la nueva palabra añadida al Urban Dictionary, o un clip de Saturday Night…

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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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…

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POTS: A Rare Disease Commonly Missed

Post author:Erica Zahn
Post published:May 9, 2016
Post category:Dysautonomia POTS

What would you do if Princess Leia suddenly went pale and passed out right in front of your eyes? Well, Crystal Caldwell's mother had that experience years ago while taking…

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…

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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…

Ambas caras de la moneda: El doctor también es el Paciente

Post author:Patient Worthy Contributor
Post published:May 5, 2016
Post category:CVID Rare Disease

Psiquiatra Dr. Jennifer Pate, de 47 años, recibe infusiones intravenosas de inmunoglobulina que salvan vidas cada tres semanas. Esto no es por elección, porque sin ellos, su sistema inmunológico está…

What Are The Odds CVID Treatments Will Get Better?

Post author:Erica Zahn
Post published:May 2, 2016
Post category:CVID Rare Disease

Finding treatment for a rare disease like CVID can feel like a dice roll. How can you find an effective treatment if doctors don't know exactly what's wrong with you? Dr. Harry…

Meme Making Contest – Are YOU Worthy Enough? #PWMemeWeek

Post author:Patient Worthy Contributor
Post published:May 2, 2016
Post category:Rare Disease

IIIIIIIIITTSS.... MEEEEMEEEEE MAAAKING TIIIIIIIIIIIIIME! Remember that sneaky little quip I hid not so secretly into a 366 talking tip post a couple of weeks back? well the time has come…

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Welcome to Lyme Disease Awareness Month

Post author:Patient Worthy Contributor
Post published:May 2, 2016
Post category:Lyme Disease Rare Disease

May is Lyme Disease Awareness Month and like other awareness months, it's all about educating the medical community and the community at large. Lyme disease is one of, if not the…

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University of Pennsylvania Football Team Kicks off Fundraising for Castleman Disease Research

Post author:Octavia Walker
Post published:April 30, 2016
Post category:Castleman Disease Rare Disease

His name is David Fajgenbaum. Although he is now a medical professor, his own journey with health and wellness has been a tumultuous one. His story starts with his time…

Dystonia Moves You. 5 People Make That a Good Thing!

Post author:Kiki Jones
Post published:April 29, 2016
Post category:Dystonia Rare Disease

Each step with dystonia can feel like a marathon. As it turns out, some people in the community mean that literally. Marathons—the 26.2 mile behemoths—have become a worldwide phenomenon. The TCS…

Cassie's Strawfie Courtesy of Nellie Photography

Model with Cystic Fibrosis Bringing Awareness to Disease

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

This model with CF took part in photo shoot for awareness campaign while suffering from pneumonia! Professional model Cassie Hawthorne is acting as the face of a social media campaign…

Esta familia buscó 5,5 años para obtener un diagnóstico ICV

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

En el otoño de 1991, Kathy dio a luz a un hermoso niño llamado Isaac. Pero Kathy y su esposo sabían que algo no estaba bien. Isaac era su tercer…

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Is This Your Best Tyrosinemia Option?

Post author:Alisha Stone
Post published:April 27, 2016
Post category:Rare Disease Tyrosinemia

Imagine your child is stuck at the bottom of a long transplant waiting list when he or she desperately needs a new liver. The thought is terrifying--and for many, terrifyingly…

There is Strength in Going Unrecognized

This 13-Year-Old Girl Will Make You Rethink CVID

Rare Disease Battle Meme

Meme Motivation – Let Your Inner Emoji Shine

MemeInfo – CVID

Students Raise Money, Awareness, and Empathy for Rare Diseases

Meme Motivation – Be Proud of Your Scars

If Happiness Is Being Mother to Twins, Here’s How AML and Mastocytosis Are Conjoined!

3 Stops to Increasing Will Power – Hope, Faith, Courage

Found! The Missing Link in Aplastic Anemia Treatments

12 minutos de inspiración – batallando el ICV

Rare Disease Tip – Don’t Say These Five Things

10 Tips for When Your Rare Child Grows Up

POTS: A Rare Disease Commonly Missed

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

This is the Formidable Force Facing Down Behcet’s Disease

Ambas caras de la moneda: El doctor también es el Paciente

What Are The Odds CVID Treatments Will Get Better?

Meme Making Contest – Are YOU Worthy Enough? #PWMemeWeek

Welcome to Lyme Disease Awareness Month

University of Pennsylvania Football Team Kicks off Fundraising for Castleman Disease Research

Dystonia Moves You. 5 People Make That a Good Thing!

Model with Cystic Fibrosis Bringing Awareness to Disease

Esta familia buscó 5,5 años para obtener un diagnóstico ICV

Is This Your Best Tyrosinemia Option?

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