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…
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…
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…
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…
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…
Ambry Genetics is a service provider to research and development physicians and patients. they've been around since 1999 and have become an authority and trusted source in genetic counseling. Ambry…
According to the Cystic Fibrosis Foundation, about 30,000 people are living with CF in the US and just about 1,000 new cases are diagnosed each year. Cystic Fibrosis (CF) is a chronic inherited disease.…
Have you ever felt lost in your own body? Have you ever temporarily lost your hearing due to massive ringing in your ears? Have you ever had the world go…
I am not a fan of reality television. But I am a helluva fan of Yolanda Foster, a Real Housewife of Beverly Hills. Though her and I probably don't have…
Okay okay. While Taylor Swift is known for bringing celebs together on the stage... ...she isn't known for any significant medical findings that might advance the field of cystic fbrosis. BUT she…
10 Things I have learned from living with Ehlers-Danlos Syndrome 1. It is not that bad to be spontaneous When I was younger I had plans and lists for…
10 Dinge, die mich das Leben mit dem Ehlers-Danlos Syndrom gelehrt hat 1. Spontan sein ist gar nicht schlecht Als ich jünger war hatte ich Listen und Pläne für…
CysticLife.org, an online network for the cystic fibrosis (CF) community, is embarking on a historic fundraising effort to support community driven research in CF. With your help, CysticLife and Mayo Clinic…
Only THREE more days for families, patient advocacy groups, and researchers to give input into NIH’s new initiative on undiagnosed disease research. Do you have ideas about strategy, metrics, approaches…
In addition to NIH and NORD there are many university-based centers for rare disease. Today’s feature: The Boler-Parseghian Center for Rare and Neglected Diseases at The University of Notre Dame,…
Doctor, please take my baby's blood! The IDF encourages Louisiana state officials to sign into law routine screenings of newborns for SCID, or Severe Combined Immune Deficiency. The IDF's ultimate goal is to…
Welcome to December 2015 PatientWorthians! 'Tis the season for sharing and do we have some stories for you! As we round #NERVEmber this week, we want to highlight some hope for our…
Expert knowledge, however indispensable, is no substitute for a generous and comprehending outlook upon the human story with all its sadness and with all its unquenchable hope.” -Winston Churchill We…
Whenever I tell someone “I have Lyme,” I get reactions varying from “Oh that shouldn’t be a big deal,” to “Oh, yeah I heard that can get bad.” I even…
Happy Day-After-Thanksgiving PatientWorthians! Around this time of year, we like to emphasize the amazing gratitude in the chronic disease world. Living with a chronic illness is often a serious bummer, to…
For Part 1 of Laurie's Life with Dysautonomia, click here. For anyone who is still doubting Dysautonomia and POTS, I've come up with what I call the Dysautonomia Party Trick Challenge.…
I am thankful that I have been able to embrace the fight I have against the crippling disease of ankylosing spondylitis (AS) and I am thankful that in the process,…
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