Living with the rare condition subglottic stenosis is never easy, especially when you're trying to keep up with your little boy. Caledon Enterprise reported that Emily Rogers does just that. She…
Out-of-pocket expenses for rare disease are astronomical, and the Ministry of Health (MOH), is taking time to find a more positive way to help benefit children and their families burdened…
On the pages of the Abby Grace Foundation website, you will find over twenty beautiful pictures of different children. Most of the children are smiling. One looks into the camera…
25-year-old Zoey Wright is a real force of nature! Having been diagnosed with the rare disease ulcerative colitis she found herself dependent upon a colostomy bag, yet that didn't stop…
The Alabama Rare Disease community has come together to host a special week in honor of the upcoming date February 28th, 2018, which is now the official International Rare Disease…
Reported by Strait Times, it was announced by Ministry of Health last week that there may be a potential fund developed to help children who suffer not only from a…
Tomorrow is Moebius Syndrome Awareness Day! Moebius Syndrome Awareness is celebrated globally each year - with the goal of raising awareness about this rare condition and to educate the many…
The only conference in the Europe that provides guidance around involving patients through the process of clinical research. Industry Fees: $1,395 or ~ £1175 rates available until November 24, 2017…
According to an article from PRNewswire, the drug MVASI (biosimilar bevacizumab) was just granted marketing authorization by the European Commission. Developed by Amgen and Allergan, this treatment has been approved…
Tiffany and Caleb isn't your typical engaged couple. They are passionately in love and excited for their wedding, but their romance could literally end any moment. NBC 5 Chicago reported…
Even though most in the medical field suggest that people think about their wishes as to how to handle end-of-life decisions, and complete the paperwork to be sure their wishes…
The Hempel family decided to take action against Vtesse and Sucampo Phamaceuticals who allegedly stole and sold their private information for profit, reported Forbes. The Hempel family has two twin…
A team of scientists recently developed an electronic nose that detects Crohn’s disease and ulcerative colitis. Continue reading below, or follow the original story to learn more about this intriguing…
The Wahlstrom family of four, is getting a miraculous gift to help care for their two children suffering from Batten disease, reported CBS Minnesota. With the love of their local…
TGIF, Patient Worthians! This week, kids went to bed wearing inside out pajamas and wishing for snow. Their wishes came true-- and so did the wishes of many rare disease…
I have fantasized at times about living in a different era. How exciting to live in the times of knights in shining armor and ladies in fancy dresses in a…
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…
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