This story was originally published in The Cystinosis Advocate, the newsletter for the Cystinosis Research Network, a Patient Worthy partner organization. Continued From Part Two We were told about what…
This story was originally published in The Cystinosis Advocate, the newsletter for the Cystinosis Research Network, a Patient Worthy partner organization. Continued From Part One At this stage, the ED…
This story was originally published in The Cystinosis Advocate, the newsletter for the Cystinosis Research Network, a Patient Worthy partner organization. Oscar was born in January 2020. He was a…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
Written by Sumeet Maniar, CEO, WellBrain Continued From Part One Monitoring Adherence to Non-Opioid Treatments Given the links between chronic pain and mental health, a large part of managing chronic…
Written by Sumeet Maniar, CEO at WellBrain In the U.S., 60 percent of all adults have a chronic disease, and 40 percent have two or more. Chronic diseases, which often…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
This story is brought to you by our friends at HAE Junior in the Czech Republic. I think that the best gift is one that will please not only the…
Written by Denise Cardell, Shavertown, PA Jeff was diagnosed at age 9 with epilepsy. He was having seizures for at least six months before but I was told he was…
Written By Katie Ward I am not one who likes to bring attention to themselves, and you won’t ever find me talking about my struggles, issues, or anything negative. I…
Written By: Teonna Woolford As a child, I never saw myself as anything but “normal.” I loved going to the playground with my friends and jumping rope. My parents encouraged…
Written by Matt Horsnell, Community Manager, TREND Community TREND Community is a leader in evidence acceleration through social data exploration for rare and chronic illnesses. Patient Worthy is at the forefront…
Rare Disease Week 2022 Rare Disease Week is the week that leads up to Rare Disease Day, which is recognized on the last day of February. This year, we are…
Rare Disease Week 2022 Rare Disease Week is the week that leads up to Rare Disease Day, which is recognized on the last day of February. This year, we are…
Rare Disease Week 2022 Rare Disease Week is the week that leads up to Rare Disease Day, which is recognized on the last day of February. This year, we are…
Rare Disease Week 2022 Rare Disease Week is the week that leads up to Rare Disease Day, which is recognized on the last day of February. This year, we are…
Rare Disease Week 2022 Rare Disease Week is the week that leads up to Rare Disease Day, which is recognized on the last day of February. This year, we are…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
Acknowledgment: This story is sponsored by CymaBay Therapeutics and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted and valuable information…
Have you ever wanted to just take a break from addressing your illness? Like, taking those medical binders and folders and just keeping them in your car trunk for a…
Continued from Part One With time my speech improved and eventually I could speak fluently again. I also worked with an occupational therapist who helped teach me how to…
Thinking about the year-end holidays brings up a kaleidoscope of images, and an array of emotions for me. And everyone else too, I imagine. There are the vivid memories of…
In May 2016, I was diagnosed with a rare genetic neurological disease called adrenoleukodystrophy (ALD). Sadly, it's incurable and there's no medication to ease my condition. Since then, my life…
By Rachel Whetstone from In The Cloud Copy Food is fundamentally linked with celebrations in every culture around the world. Families gather for a feast at big holidays and birthdays…
What does it mean to you to be living with a rare disease or chronic illness at this time of year? Over the years, since I was diagnosed I've never…
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