What would you do if you were the parent of a 5-year-old who is diagnosed with an extremely rare, incurable disease that causes vision and hearing loss, various neurological dysfunctions…
Welcome to the first of many posts related to Patient Worthy's Video Series! We had the pleasure of interviewing PW contributor Kathryn Ferguson, a mother and a wife, who has…
I have had two major life-altering “incidents” in my life. How each was treated was so amazingly different, it leaves me in a place where advocating for myself and others…
Happy New Year Patient Worthians! This week, we kicked off #NewYearNewYou. We want to hear how you are making 2016 the best year yet! We are also continuing our support for CysticLife's collaboration with the…
New Year, New Attitude. All of us that have chronic illnesses have said it at some point when that clock counts down to the new year. “This year I will…
To read part 1 of Laurie's #NewYearNewYou goals, click here. I recently became a state chapter leader for the Dysautonomia Support Network. I love it and it's really helped me…
With the new year approaching I've been thinking of ways that I can be more involved with my health. Not the standard lose weight and exercise nonsense like most people…
Ah the New Year. Before I was diagnosed with a chronic illness, I used to make similar, casual New Year's resolutions like "drink less alcohol" or "spend less money eating…
Merry Christmas Patient Worthians! And no worries if you don't celebrate it, because we're celebrating the overall spirit of giving by supporting this crowdfunding initiative with CysticLife. This month, we have been teaming…
When Harry Met Chelsea I frequently refer to online dating as “shopping for men.” I have my list of attributes I’d like to find in a mate, and the men…
I have no experience living with cystic fibrosis or understand what it feels like to go through the daily regimen. I do know what it’s like to give care to…
We know that the cost of medical treatment, even with great insurance, is high. Transportation, parking, inability to work full-time because you are taking care of a very ill family…
Weclome back to another week of Editor's Choice picks! This month, we are spotlighting cystic fibrosis to support our partnership with CysticLife. PatientWorthy is teaming up with CysticLife.org to spread awareness of…
Shelby Klug, a 17-year-old from LA, was diagnosed with cystic fibrosis (CF) at age 2. Cystic fibrosis is a genetic disorder that causes damage to the lungs and digestive system.…
If you have cystic fibrosis, you might know that it is linked to low PH levels. The current PH sensors aren't sensitive enough to capture molecules at different stages called…
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…
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.…
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…
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…
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