The CureGRIN Foundation has recently announced that its annual conference will be held virtually this year as a result of the ongoing coronavirus/COVID-19 pandemic. This year's event will be held…
by Lauren Taylor from In The Cloud Copy Long QT syndrome, also called LQTS for short, is a disorder of the heart’s rhythm that can possibly cause the heart to…
by Danielle Bradshaw from In The Cloud Copy Elaina Pechota loves to dance. Back in 2018, however, the teen had a fall during one of her classes, and her entire…
According to a story from The Garstang Courier, Joshua Brandwood of Lancaster, UK has begun organizing a 5K run as a fundraiser for the family of Lexi Tindale, a girl…
According to a story from eminetra.com, 37 year old sarcoidosis patient Sonja Nixon Frazier sprung into action when she was working at Taco Bell. She along with two workers knew…
Of the things we take for granted about our existence, I venture to say vision is pretty high on the list. Even if your eyesight starts to go it can…
Kara LeFrance Kara LeFrance is diagnosed with acromegaly, a rare disease, and she's been battling it since she was 20 years old. Unfortunately, it took eight years after her first…
Zacari was born with a rare neuromuscular disorder called arthrogryposis multiplex congenita. Children with the disease are unable to straighten or bend their legs or arms. Yet, according to…
The Cystinosis Research Network (CRN) has created a new program to bring light to cystinosis families during these uncertain times. It is called the Brighter Days Care Package Program. Brighter…
Rare disease or health-related foundations often encourage patient advocacy, research, and discussion around new treatments. According to Parkinson's News Today, the Parkinson's Foundation is doing their part in advancing…
When Trey Kearns was two, he had a terrible itch. His itch wasn’t like yours - it was inside the body, meaning it's an itch you can’t scratch. They came…
According to a story from the Columbus Dispatch, Brian McNeal has been living with trigeminal neuralgia for four years. The rare disease leaves him in constant facial pain. The chronic…
When it comes to COVID-19, many people believe, "Well, it can't happen to me!" But with 16.8 million diagnosed cases worldwide, and nearly 4.5 million of those in the…
Three people with an eye on the future talk about their innermost feelings and the fact that their lives may be interrupted at any time by their chronic illness.…
According to a story from Youth Today, the Americans with Disabilities Act (ADA) was first passed 30 years ago, in 1990. This historic law helps protect people that live with…
Scares That Care Scares That Care is a 501(c)(3) organization, first established in 2007 by Joe Ripple, dedicated to fighting the "monsters" of childhood illnesses, breast cancer, and burns. They support…
According to a story from Charcot-Marie-Tooth News, a new nonprofit organization called Shark Tooth Cycling has recently begun operations. The mission of the organization is to encourage young people in…
July 30th, 2020 is recognized as Gastroschisis Awareness Day. This event aims to help spread awareness about gastroschisis, a rare birth defect, among both the general public and within the…
According to a story from The Philadelphia Inquirer, 25 year old Gabby McNary isn't taking any risks when it comes to the coronavirus/COVID-19 pandemic. Philadelphia was hit hard by the…
According to a story from waff.com, Juliana Goode was first diagnosed with Cushing's disease in September 2018. It was an unusual case as Juliana is a teenager and the illness…
According to a story from gopresstimes.com, Lily Laurent, a 13 year old student at De Pere middle school in Wisconsin, has lived with juvenile idiopathic arthritis for nine years. While…
According to a story from msn.com, two women who were impacted by the rare disease familial chylomicronemia syndrome (FCS) have lead the charge in changing the procedures used by the…
Reprinted with permission from Findacure.org Today’s guest blog is written by Polly Moyer, Co-founder of the Action for Mal de Debarquement Syndrome UK facebook page and founder of the Familial MdDS facebook…
According to a story from theindychannel.com, brothers Elias, age eleven, and Emmett, age seven, were both born with the rare bleeding disorder hemophilia A. However, this has not stopped them…
According to a story from keloland.com, Westin Cuka, age six, was first diagnosed with neurofibromatosis, a rare disorder, three years ago. Since then, the family has traveled on multiple occasions…
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