Cigarettes have been repackaged for the 21st century. The new millennial pass-time is vaping, an electronic device that heats a liquefied solution of nicotine or THC that becomes vaporized as…
As originally reported in Medical Xpress, the ’smart shirt’ is a comfortable shirt for daily life that also functions as wearable technology. The shirt is equipped with sensors that track…
Not just anyone can cure their own illness. Understanding how to cure a rare disease is complex, as these illnesses often have unique and poorly understood characteristics. Treatment and diagnosis…
Data in the Modern Age The depth of information available today is unique to our age of technology. Current advances provide a platform to consolidate information on a wide array…
As originally reported in Pinnacle Care, when you are diagnosed with a rare disease, it can seem there is the whole world opening that you must learn all the crevices…
Recently, different celebrities have been making their chronic conditions public via social media. Lena Dunham was motivated for a similar reason to Billie Eilish, who revealed she has Tourette syndrome,…
As originally reported in NBC News, Mitchel Herndon was witty, sporty, and very close with his siblings. At 19, he began to study as a freshman political science and theology…
As originally reported in Nottinghamshire Live, oculocutaneous albinism is a rare inherited disease thats recognizable to some; many know it for causing pale features, white hair, and light eyes. It…
As originally reported in South Africa Latest News, Healx Ltd. has raised $56 million dollars to fund their development of treatment options for rare diseases using artificial intelligence. The British…
As originally reported in Michigan Medicine News, the Nephrotic Syndrome Study Network (NEPTUNE) has received their third five year cycle of funding to research rare kidney diseases. Right now, NEPTUNE…
As originally reported on NPR, Alex Yiu’s mom has a montage of her son's early years. As one watches the videos, you see something: him losing control. He begins to…
When Jordan Berkhoudkt was in middle school, he began to have pain that they couldn’t find a way to relieve. He couldn’t get an accurate diagnosis from the doctors in…
As originally reported in WWVA, West Virginian Sib Weatherford spent one afternoon this fall doing what nobody though possible: he slid 400 feet down the New River Gorge's high-line in…
As originally reported in SF Gate, Jeannette and Victor Vega quickly realized that taking care of their second daughter, Tiana, was not going to be so easy this time. From…
Gypsy Rose Blanchard spent a life suffering through neverending doctors appointments, surgeries, living in a wheelchair, and being fed through a feeding tub. As it turned out, these treatments weren't…
Sometimes, epidemics don’t make headlines. That seems strange, a major health risk causing death to ripple through communities, and yet we're more likely to hear about whats happening with the…
As originally reported in The Age, Karen Carey, 57, and Connie Severino, 42, were called to the emergency department at St Vincent’s Hospital at the same time. Each were told,…
Sometimes, rare diseases are so rare that they are just as unique as the individual who has it. One child was suffering from a fatal neurodegenerative disease, and the family…
As originally reported by EurekAlert, eosinophilic gastrointestinal disorder research will receive a boost with the renewal of a $7.57 million grant administered over five years awarded to the Cincinnati Children’s…
A new joint clinicial investigation has come out with a reminder to patients with primary hyperoxaluria type 2 (PH2) to adherr to the requirements regarding careful follow up proceedings. This…
On Friday, internationally renowned singer-songwriter Sia tweeted, "Hey, I'm suffering with chronic pain, a neurological disease, ehlers danlos and I just wanted to say to those of you suffering from…
Maybe you remember the day of your diagnosis: shocking, confusing, chaotic. Realizing the news will change your life, but not quite knowing how. Jessie Ace was 22 years old, finishing…
As originally reported in Cambridge Independent, inflammatory bowel diseases are about to get a boost in research after Health Data Research UK has awarded a £5 million grant to a…
Consent is a concept back under discussion in modern conversations as we readdress what it means to cross the line. Consent is no longer seen in the black and white…
Most young people are familiar with vaping: nicotine or THC repackaged in a sleek and less stigmatized device. It is less obviously recognizable as destructive as cigarettes in part because…
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
