According to a story from Daily Nation, Beneddettah Wangui of Kenya had been experiencing chronic pain since her teen years when she was finally diagnosed with fibromyalgia in 2012. However,…
According to a story from Medical Xpress, a team of researchers affiliated with the University of Granada and the research organization CIBERFES have discovered a pair of new mutations linked…
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…
According to a story from governmenteuropa.eu, Professor Susanne Kircher, who is associated with the Austrian MPS Society and the Medical University of Vienna, writes about the state of rare diseases…
According to a story from stltoday.com, the Saint Louis Walk for PKD (polycystic kidney disease) took place on Sunday, October 13th, 2019. This event was just one of many that…
According to a story from scienceblog.com, a recent study has revealed that large portion of cystic fibrosis cases recorded in the Dominican Republic and Puerto Rico are linked to genetic…
.jpg)
The concept of N-of-1, or personalization of clinical care, originated in the 1980s according to an article in The Scientist. It began with a sixty-five-year-old Ontario man who was…
According to a story from NBC News, the US Food and Drug Administration (FDA) issued an announcement during the summer detailing a patient death linked to the use of fecal…
According to a story from statnews.com, the approval of the new cystic fibrosis drug Trikafta has caused quite a buzz in this rare disease community. While this new drug offers…
"We went from being able to treat no patients to being able to treat nearly all patients in seven years." 90% of cystic fibrosis (CF) patients now have a new treatment…
Hogan Teem was a healthy seventeen year old. He had a girlfriend and he spent his summers mowing lawns in his North Carolina hometown. Hogan played football, baseball, and…
According to a story from shrewsbury.wickedlocal.com, biomarker testing has now become an important step for the treatment of cancer. In the past, most cancer treatments were based on where the…
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…
According to a story from The Washington Post, data regarding the recently approved drug Trikafta, which is designed to treat cystic fibrosis, was so convincing that the US Food and…
FA Fanconi anemia (FA) is a rare disease in which the bone marrow in the body essentially fails. It is a genetic condition where the body progressively becomes deficient in…
GlaxoSmithKline (GSK) has just announced that Zejula, otherwise known as niraparib, has just been approved for cancer patients beyond those who have a BRCA+ mutation. The patients now included in…
According to a story from Fabry Disease News, a recent study has found that certain cells tend to age more rapidly in patients with Fabry disease when compared to unaffected…
According to a story from Buzzfeed News, Facebook has been receiving more negative press than ever lately, and so far it often seems justified. From the Cambridge Analytica scandal to…
According to a story from BioSpace, the biopharmaceutical company Newron Pharmaceuticals S.p.A. has announced that is partnering with the Rett syndrome disease community in order to sponsor an all new…
Narcolepsy is a rare neurological disease that affects the sleep cycle. Symptoms include sleep paralysis, excessive daytime sleepiness, disrupted nighttime sleep, hypnagogic hallucinations, and, for around 70% of patients, cataplexy.…
According to a story from Kent Online, like many other four year olds around the world, Olivia Wilkes will start attending school this year. However, her situation is different from…
If you or someone you know has ADPKD, email us at [email protected]. We’d love to hear from you about your experience! According to a story from Medscape, a subject of…
The number of systemic juvenile idiopathic arthritis patients who develop lung disease (sJIA-LD) is rising in both the U.S., Europe, the Middle East, and Canada. This trend has been notable…
According to a story from Express Digest, young mom Emily Nixon, age 25, was heartbroken when her oldest daughter Darcy Roger, age 6, passed away only five days after her…
Little Rozárka’s mother isn’t giving up. Her daughter is the only person in the Czech Republic with tetrasomy X, and is one of 50 people in the world with the…
© 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.
