Days in 2018, we have some great statistics on 2017! According to the United Network for Organ Sharing (UNOS), over 10,000 organ donations were made, marking the first year that number has been…
America first started noticing South African runner Annie Bothma at the Roy Griak invitational in 2015. She came in third! Not only is she talented, but her preferred running technique…
According to a story from wepclinical.com, the Creating and Restoring Equal Access to Equivalent Samples Act, also known as the CREATES Act, was introduced in 2017 in order to accelerate…
According to a story from Syosset Jericho Tribune, the charity basketball fundraiser called Hoops for Harrison is back again this year. The tournament was named after Harrison Gillman, who now…
Although it never should have happened, at least the right course of action was taken! Reggie Bibbs of Houston, Texas was turned away from his Uber driver when he requested…
At only six years old, Simeon Augustus Peterson, also referred to as "Mr. Pete," was diagnosed with Hansen's disease. From then on, he lived the rest of his life cut…
Nothing is worse for a family than hearing the word “cancer,” especially when it involves a child. The Tyson family was ready to start their perfect life eleven years ago.…
Madison Simons, a 20-month-old child has visited the hospital more than 12 times and spent more than 50 days at the Baylor Scott & White McLane Children's Hospital this passed…
Happy Friday, Patient Worthians! This week we have articles about people working together on different types of rare disease teams. We have stories from a family who supports two children…
When you are in the midst of difficult times in your life, what do you do to make it through? Do you try and find a way to hide out…
Gene therapy has successfully made its presence known in the medical field this last year, reported ABC News. Dr. Francis Collins of the National Institutes of Health isn't afraid to…
WASHINGTON, D.C. & SAN DIEGO — Children’s National Health System and Retrophin, Inc. (NASDAQ: RTRX) are pleased to announce the creation of the Retrophin Rare Disease Network at Children’s National.…
When you are going through the daily struggles of living with a rare disease, you feel alone. It is hard to accept the support from family and friends because they…
The Cystinosis Research Network (CRN) is offering scholarships to prospective college students who have been impacted by the condition. The organization offers two different scholarships, one for a student that…
I am always incredibly inspired by the people that don’t allow their rare diseases to prevent them from doing what they love. Whether it’s been Charity Tillemann-Dick with opera or Olivia…
Pondering “If only” and “What if “ adds anxiety for rare disease families. It seems to be a part of human nature that we do a lot of looking back,…
Have you been told that you had to stop doing your passion in life because of your rare disease? This is the story of opera lover, Charity Tillemann-Dick. Her life…
Welcome back, Patient Worthians! We're starting out the new year with stories of strength and awareness. This week, we have an article about a man with CSF leak, whose life…
Debora Chambless was on a steady decline. She suffers from nonalcoholic steatohepatitis, the most extreme form of non-alcoholic fatty liver disease. Debora and her husband Bill are active churchgoers, and…
No family faces life's unexpected challenges better than the family of Bella and Liam Brya. Allison and her husband, Bill, deal with the struggles of having two children, Bella and…
In 2009 Emily Rochac Argueta realized her vision was rapidly deteriorating headed towards blindness, reported Times Union. The aspiring physician assistant was diagnosed with keratoconus, a rare eye disease that…
High school football player McCaulley McGuire doesn't let his isovaleric acidemia keep him from playing the game, reported Times Free Press. Diagnosed with the rare disorder when he was only…
Nanette Whitfield, stood beside her best friend and husband as amyotrophic lateral sclerosis (ALS) painfully took his life, reported The Record Courier. Watching someone you love slowly lose everything has…
Despite the obvious cliché nature of the old adage, knowledge really is power. Technology and medical advancements give doctors and researchers more information than anyone could have fathomed even a…
Olivia Ports recently performed for over a thousand people, including the Mayor and Governor of Chicago, helping to raise $3.75 million for research by Lurie Children’s Hospital in only one…
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