Back to our interview with Mary! Miss the first part? Click here. Mary:- "I think education is power and the more you know about your disease process the more prepared…
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…
Researchers in rare disease find it very challenging to find specimens. The Newborn Screening Translational Research Network (NBSTRN), has developed an easy way for researchers to access specimens through the…
Hey, want to know how to really ruin the day for someone living with excessive daytime sleepiness (EDS)? Just tell them “Oh, I get tired a lot too.” Apart from…
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…
So here’s a nice antidote to all those stories about greedy pharma execs soaking patients for ultra-expensive treatments. There’s a new approach to contrpay-acting between insurance companies and pharmaceutical companies…
This month, I came across the most refreshing article written by Caroline Newman and featured in UVA Today's Art & Culture section about one of the longest living cystic fibrosis survivors.…
Mary is a former registered nurse, a mother to four daughters, a wife, and a grandmother to one grandson as well as several “grandpets”. She’s an avid gardener; growing cherry…
The Oley Foundation is a lifeline of support for those dependent on home IV nutrition (HPN) or tube feeding (HEN). There are many causes for the inability to adequately nourish…
If you have narcolepsy, excessive daytime sleepiness, and/or cataplexy, you know how hard it can be to function in "real-world" time. And while treatments have improved, there is still no…
Over the past few years, Casey Higgins, a 27-year-old Ohio woman, has required supplementary oxygen 24/7 to help her breathe. Diagnosed with the genetic disease cystic fibrosis at the age of…
Robert began his mission to raise awareness of Cystic Fibrosis after getting to know someone who had lived with it for forty one years. As he puts it; “She inspired…
Newly diagnosed patients and those who have been living with their illness(es) for a long time cope with their situation in very different ways. Some like to read while others…
On the fabulous Cystic Fibrosis Lifestyle Foundation website, CF blogger Brian Callanan has issued a call to action. He wants to hear from all of you whether you are reactive or proactive…
To catch up on Alexis' Lyme disease journey, check out Part 1 of her story here. "In my line of work, when evaluating a case for a newly placed foster…
Everyone remembers the kid in class who wouldn’t stop talking long enough to know the lunch bell rang. Or the bad dinner date that wouldn’t shut up about their cat.…
Meet Patient Worthy’s newest contributor! Nikole is a mom with a background in education and incredible insight to the realities many chronically ill patients face. Diagnosed with Mixed Connective Tissue…
What do you do with 180 minutes? Think about it for just 1 minute... Now, spend 1 more minute watching the video below. For the some 30,000 people living with CF, days…
Happy Friday PatientWorthians! We are so excited to announce our partnership with CysticLife this month. PatientWorthy is teaming up with CysticLife.org to spread awareness of CF and support their collaboration with the Mayo…
As you probably know by now, this month, PatientWorthy is teaming up with CysticLife.org to spread awareness of CF and support their collaboration with the Mayo Clinic for a community-driven research project…
A chronic Lyme disease diagnosis will change your life. But sometimes, the biggest battle is just getting the diagnosis in the first place. In part one of PW Contributor Alexis…
It could be a story out of a spy novel: While coded messages are being passed, an outsider attempts to infiltrate and disrupt communication. Part of the mission involves smuggling important equipment…
Franciscan Institute for Science and Health in Steubenville, Ohio sponsors research on metabolic defects which can lead to rare mitochondrial related seizure disorders. While this is a limited rare disease program- if…
I’ve been using internet dating sites for the past eleven years. I have also been dealing with a rare and undiagnosed disease for the past five and a half years.…
Imagine for a moment what your version of a perfect life looks like. Perhaps it’s a glamorous life filled with fame and fortune, or perhaps it’s a life where you…
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