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Rare Disease

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A Pie to the Face in the Name of PI

A Pie to the Face in the Name of PI

  • Post author:Winnie Nash
  • Post published:October 28, 2015
  • Post category:Primary Immunodeficiencies/Rare Disease

What gets teens more hyped than watching someone get a pie in the face!? Apparently, nothing! At least, Joseph Maronski and Madison Shaw seemed to think that was a pretty solid…

Continue Reading A Pie to the Face in the Name of PI

Esta mama te hara querer darle una abrazo a todos los profesores

  • Post author:PW Blogger
  • Post published:October 27, 2015
  • Post category:Rare Disease

Los ves por todas partes – A pesar de que se ven totalmente fuera de lugar en el súper mercado o en el cine, o –pero aun- bailando en el…

Continue Reading Esta mama te hara querer darle una abrazo a todos los profesores
How to Be a Mile High and HAE Happy

How to Be a Mile High and HAE Happy

  • Post author:Lady Kehveen Abernathy
  • Post published:October 27, 2015
  • Post category:HAE/Rare Disease

Yes, the weekend of October 9, saw the Hereditary Angioedema Association (HAEA) a mile high and happy--but not the way you're thinking! What's wrong with you? The HAEA hosted the…

Continue Reading How to Be a Mile High and HAE Happy
This is Why Doctors Need to Care More About You
source: pixabay.com

This is Why Doctors Need to Care More About You

  • Post author:Ronald Ledsen
  • Post published:October 27, 2015
  • Post category:CVID/Rare Disease

Bronchiectasis is a condition which damages the airways leading in and out of the lungs, stripping them of their mucus-clearing capabilities. Common variable immune deficiency (or CVID) is an immune…

Continue Reading This is Why Doctors Need to Care More About You
Pregnancy and Chronic Illnesses Definitely Don’t Mesh, But Fear Not!
source: pixabay.com

Pregnancy and Chronic Illnesses Definitely Don’t Mesh, But Fear Not!

  • Post author:Farrah Fontaine
  • Post published:October 26, 2015
  • Post category:Behçet's/Rare Disease

We all have that one relative, who every time they see you, always asks, “So, when are you having kids?” or the mom who is desperate to be a grandmother.…

Continue Reading Pregnancy and Chronic Illnesses Definitely Don’t Mesh, But Fear Not!
Breakthrough! Why You Should Care About FDA HAE Designations

Breakthrough! Why You Should Care About FDA HAE Designations

  • Post author:James Ernest Cassady
  • Post published:October 26, 2015
  • Post category:HAE/Rare Disease

Recently, the FDA gave "breakthrough therapy" status to a potential new drug that may help prevent HAE attacks. But how does that affect you, the patient? What does "breakthrough therapy" really mean?…

Continue Reading Breakthrough! Why You Should Care About FDA HAE Designations
How to Avoid FH Rabbit Holes and Dig the Truth

How to Avoid FH Rabbit Holes and Dig the Truth

  • Post author:Alisha Stone
  • Post published:October 26, 2015
  • Post category:Familial Hypercholesterolemia/Homozygous Familial Hypercholesterolemia/Rare Disease

Familial hypercholesterolemia (FH),  a genetic disorder associated with extremely high levels of LDL cholesterol, can be frightening. Many people are diagnosed in infancy, and it’s not uncommon for even children…

Continue Reading How to Avoid FH Rabbit Holes and Dig the Truth
Wanted: Blood Donors with Big Throbbing Healthy Hearts

Wanted: Blood Donors with Big Throbbing Healthy Hearts

  • Post author:Alisha Stone
  • Post published:October 26, 2015
  • Post category:CGD/CVID/Primary Immunodeficiencies/Rare Disease/SCID

In case you didn’t know, October 11-17, 2015 marks the third anniversary of commemorating International Plasma Awareness Week. Sure, you might think that it’s just another ho-hum “awareness week” but…

Continue Reading Wanted: Blood Donors with Big Throbbing Healthy Hearts
The SubQ Challenge: How To Really Overcome Your Needling Fear

The SubQ Challenge: How To Really Overcome Your Needling Fear

  • Post author:Winnie Nash
  • Post published:October 23, 2015
  • Post category:Behçet's/Rare Disease

To SubQ, or not to SubQ? That is a question many people living with chronic illnesses face at some point in their lives. For some, subcutaneous injection (SubQ) is the…

Continue Reading The SubQ Challenge: How To Really Overcome Your Needling Fear
What Should You Know Waiting for Gene Therapy?

What Should You Know Waiting for Gene Therapy?

  • Post author:Erica Zahn
  • Post published:October 23, 2015
  • Post category:Primary Immunodeficiencies/Rare Disease

For many people suffering from rare diseases, gene therapy offers the hope for relief and perhaps a cure for their particular condition. But while many studies are underway, to date, few drugs have…

Continue Reading What Should You Know Waiting for Gene Therapy?
This Town Completely Blows Man Away with Their Generosity

This Town Completely Blows Man Away with Their Generosity

  • Post author:Winnie Nash
  • Post published:October 23, 2015
  • Post category:Rare Disease/Sarcoidosis

When this Arkansas community rallies, they conquer. TJ Cluck was one of the thousands of people involved in the Joplin Tornado, a devastating EF5 twister that killed 161 people in…

Continue Reading This Town Completely Blows Man Away with Their Generosity
Which Hilarious Character is Your Rare Disease

Which Hilarious Character is Your Rare Disease

  • Post author:Kiki Jones
  • Post published:October 23, 2015
  • Post category:Ankylosing Spondylitis/Behçet's/CAPS/CVID/Dystonia/Familial Hypercholesterolemia/HAE/Rare Disease

Having a rare disease sucks, but sometimes it helps to cut your disease down to size mentally--especially if you can't do it physically! And, hey, laughing is better than crying,…

Continue Reading Which Hilarious Character is Your Rare Disease
Upcoming Event! Virginia Epilepsy Awareness Walk

Upcoming Event! Virginia Epilepsy Awareness Walk

  • Post author:Rebekah
  • Post published:October 23, 2015
  • Post category:Rare Disease

What are you going to be doing on the afternoon of Halloween? Some kind-hearted people will be participating in a walk, for a spooky great cause. On Saturday October 31st…

Continue Reading Upcoming Event! Virginia Epilepsy Awareness Walk

Her Near Death Meant New Hope for 6-Year-Old Son

  • Post author:Kiki Jones
  • Post published:October 22, 2015
  • Post category:CAPS/Rare Disease

We all know that an early diagnosis can save lives. But, in an unexpected turn, this mother’s late diagnosis is what saved her son. RareConnect.org details the story of Malinda…

Continue Reading Her Near Death Meant New Hope for 6-Year-Old Son
A Promising New Acromegaly Drug Awaits FDA Blessing
source: pixabay.com

A Promising New Acromegaly Drug Awaits FDA Blessing

  • Post author:Ronald Ledsen
  • Post published:October 22, 2015
  • Post category:Acromegaly/Rare Disease

If you’re one of the small number of people living with acromegaly symptoms today (an estimated 60 out of every million people worldwide), we’ve got some good news for you.…

Continue Reading A Promising New Acromegaly Drug Awaits FDA Blessing
Here’s Something About Bubble Boy That You Never Knew

Here’s Something About Bubble Boy That You Never Knew

  • Post author:Ronald Ledsen
  • Post published:October 22, 2015
  • Post category:Primary Immunodeficiencies/Rare Disease/SCID

For those of us who grew up in the 1970s and 1980s, the phrase “Bubble Boy” zaps us right back to a sharp mental image that will always stick with…

Continue Reading Here’s Something About Bubble Boy That You Never Knew
The FDA Just Gained Big Brownie Points from Rare Disease Patients

The FDA Just Gained Big Brownie Points from Rare Disease Patients

  • Post author:Winnie Nash
  • Post published:October 22, 2015
  • Post category:Rare Disease

Earlier this year, the FDA took bold steps, launching them closer to efficient rare disease drug development. And now, the potential improvement for rare disease patients could be huge. Why?…

Continue Reading The FDA Just Gained Big Brownie Points from Rare Disease Patients

5 True or False Facts About Empires’ Lucious Lyons’ Myasthenia Gravis

  • Post author:Patient Worthy Contributor
  • Post published:October 21, 2015
  • Post category:Myasthenia Gravis/Rare Disease

Does the name Myasthenia Gravis sound slightly familiar? Probably not, but if you're a fan of the show #Empire, you came across it when Lucious Lyon was famously diagnosed with…

Continue Reading 5 True or False Facts About Empires’ Lucious Lyons’ Myasthenia Gravis
Marty and the White House Tell Us What #BacktoFutureDay is Really About

Marty and the White House Tell Us What #BacktoFutureDay is Really About

  • Post author:PW Blogger
  • Post published:October 21, 2015
  • Post category:Rare Disease

In recognition of Back to the Future day, the exact date that Marty Mcfly traveled to in 1985,  The Micheal J. Fox Foundation and the White House are encouraging speculation…

Continue Reading Marty and the White House Tell Us What #BacktoFutureDay is Really About
8 Ways Caregivers and Friends Can Support People with Narcolepsy

8 Ways Caregivers and Friends Can Support People with Narcolepsy

  • Post author:Alisha Stone
  • Post published:October 21, 2015
  • Post category:Narcolepsy/Rare Disease

To all of the friends and families of people who have narcolepsy or symptoms of narcolepsy: LISTEN UP! In case you weren’t aware, narcolepsy is a serious and chronic, yet…

Continue Reading 8 Ways Caregivers and Friends Can Support People with Narcolepsy
10 Do’s and Don’ts When You See a GLUT1 DS Child Have a Seizure

10 Do’s and Don’ts When You See a GLUT1 DS Child Have a Seizure

  • Post author:Alisha Stone
  • Post published:October 21, 2015
  • Post category:GLUT1 DS/Rare Disease

California is home to a large number of amusement parks that are beloved by thousands of children and their families. Of course we love theme parks; it’s American as apple…

Continue Reading 10 Do’s and Don’ts When You See a GLUT1 DS Child Have a Seizure
Half a Million People Are Affected, So Why is This a Secret?

Half a Million People Are Affected, So Why is This a Secret?

  • Post author:Erica Zahn
  • Post published:October 21, 2015
  • Post category:Dystonia/Rare Disease

Eight years ago, Gina Rosendall-Saucedo received a diagnosis for her persistent movement disorder that she never expected. After an 18-month search for answers, she finally had one, but it was…

Continue Reading Half a Million People Are Affected, So Why is This a Secret?

20 Shocking Songs About Chronic Disease That Will Spill Your Coffee

  • Post author:Patient Worthy Contributor
  • Post published:October 20, 2015
  • Post category:Dystonia/Homozygous Familial Hypercholesterolemia/Narcolepsy/Rare Disease

Here at PatientWorthy, we think laughter can be the best medicine. Ironic humor is sorta our thing. But to those easily offended, or perhaps even moderately intolerant, we suggest you…

Continue Reading 20 Shocking Songs About Chronic Disease That Will Spill Your Coffee
One Mother’s Fight Against PI Has Now Benefited Thousands

One Mother’s Fight Against PI Has Now Benefited Thousands

  • Post author:Patient Worthy Contributor
  • Post published:October 20, 2015
  • Post category:Primary Immunodeficiencies/Rare Disease

Ellicott City, Maryland | President Marcia Boyle has spent decades advocating for people with immune deficiencies. Her own son was diagnosed more than 30 years ago when he was an…

Continue Reading One Mother’s Fight Against PI Has Now Benefited Thousands

A Wheelchair Bound Girl Just Wanted to Dance, This Organization Made it Happen

  • Post author:Rebekah
  • Post published:October 20, 2015
  • Post category:Dystonia/Rare Disease

Imagine having a disorder that controls your movements. A disorder that causes painful muscle contractions that can’t be stopped. Imagine being in a wheelchair because of this....and wanting to dance.…

Continue Reading A Wheelchair Bound Girl Just Wanted to Dance, This Organization Made it Happen
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