If ever there was a “girl next door,” it’s Ashley Coleman, a beautiful, bright-eyed-blonde and very active young woman! She’s got the smile of a Homecoming Queen! Even though Ashley…
Continue Reading“Girl Next Door’s” Inspiring Destiny With Cystic Fibrosis and Exercise
Okay, people in the CF Community, listen up! A new targeted treatment for Cystic Fibrosis (CF) may be on the horizon sooner vs. later, and I’m pretty freaking excited about it! This…
Continue ReadingWhat Do You Need to Know About New Cystic Fibrosis Treatment?
This CF drug is good news for health... and also awful news financially.
Not long ago, Vertex Pharmaceuticals scored a big one for their investors—the European Commission has approved the use of ORKAMBI® (lumacaftor/ivacaftor), for the treatment of cystic fibrosis. This breakthrough treatment will be used…
Continue ReadingThis Drug is the Best and Worst News for Cystic Fibrosis
NY Rangers play hockey with little girl with Tyrosinemia Type 1.
News services recently picked up a fascinating story that I think everyone should read! Little 8-year-old Kayleigh Petersen, from East Brunswick, New Jersey, stunned a packed crowd of loyal hockey…
Continue ReadingNY Rangers Love This Little Girl with Tyrosinemia. See Why!
Ever have one of those days when you just weren’t feeling very enthused about your life? You know what I’m talking about. Those ho-hum blues. Those days when you don’t…
Continue ReadingYou’ll Do Your Happy Dance When You Read About This Little Boy!
I know. I know—nobody likes sifting through a bunch of scientific research “shtuff.” I sure don’t—especially when they don’t dumb it down for a layperson to understand. But when we’re…
Continue ReadingCan Someone PLEASE Make Sense of the Latest CF Research?! It’s Gobbledygook!
Okay, all of you dog lovers, listen up! Love ‘em all ya want—shower your own dog, your neighbor’s dog, a random dog in the park—with all the kisses, hugs, and…
Continue Reading5 Crucial Faux “Paws” to Avoid With Service Dogs
Lo admito; De las docenas de veces que he visto a la película "The Princess Bride", nunca me detuve a pensar en el actor Andre Roussimoff. Él es el tipo…
Continue ReadingCrees que TU tienes problemas? Una historia de gigantes
Not long ago, I started following some press about an adorable tween named, Maddie, from Lawndale, NC, who is living with Behçet’s disease, and I’m just smitten! At the ripe…
Double D's. And not the good kind. Disease and Depression. All too often, after being diagnosed with a chronic illness, patients just give up. They withdraw. They stop trying. They…
Continue ReadingHow This Young Woman’s Double D’s Are Changing the World
Every pregnant woman should know about this SCID testing.
When I joined millions of other obsessed fans who watched what’s become the wildly popular “Bubble Boy” episode on Seinfeld back in 1992, I had no idea there was a shred…
Continue ReadingWhat Every Pregnant Woman Should Know About Newborn Testing
If you or your loved one is living with a rare chronic disease, you’ve probably gone through the various stages of grief: denial, anger, depression, bargaining, and hopefully acceptance. Depending…
Continue ReadingWhy Do Good People Have to Suffer with Their Arthritis?
The PAF is increasing its efforts to fund co-pays for those suffering from HoFH.
If you or your loved one is living with homozygous familial hypercholesterolemia (HoFH), you’re going to be thrilled with this news--and you deserve it, too! The Patient Advocate Foundation (PAF) just announced on November 2nd,…
Continue ReadingHow and Why You Should Get Big Money for HoFH Medication
For anyone living with a progressive chronic illness, life ain’t no “box of chocolates.” No matter how positive or optimistic people are, living with pain and fatigue--day in and day…
Continue ReadingWe Ask You, $100k in Cash or Ankylosing Spondylitis Cure?
Let’s face it. Every now and then, you run across an article that makes ya wanna go, “Whaaaa?” And this is the perfect example. Apparently, a bunch of research analysts…
Continue ReadingTrump This?! Obamacare to the Rescue. Seriously.
‘Tis the season! Picture it. Salem, Massachusetts. It’s 1692 and suddenly, things have gone horribly, horribly wrong for you. In the middle of the night, a small band of angry…
Continue ReadingWhat Does This Witch Have in Common with CRPS/RSD?!
In August 2015, pharmaceutical giant, Shire, made public their new deal with Sanquin, the company that manufactures CINRYZE®. CINRYZE is a drug that is indicated for the rare disease disorder,…
Continue ReadingWhy You Should Give a Flying Flip About This New Drug Deal
Eric Mevis, suffers from dystonia, in his case oral mandibular dystonia, a rare disease that causes facial muscles, such as those in his lips and tongue, to twist and contract uncontrollably.…
Continue ReadingMedical Marijuana to the Rescue for Dystonia Treatment
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…
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 ReadingWanted: Blood Donors with Big Throbbing Healthy Hearts
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 Reading8 Ways Caregivers and Friends Can Support People with Narcolepsy
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 Reading10 Do’s and Don’ts When You See a GLUT1 DS Child Have a Seizure
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