Ovarian cancer is the most deadly form of reproductive organ cancers. Why? Because it's usually not diagnosed until it has reached the late stages because the symptoms are often overlooked,…
Cystinosis breaks my heart. Why, you may ask? Because it robs children of their childhood. I'll explain in a moment--but first, let me give you a general overview of the disease.…
Want some more news, events and announcements on CGD? We got 'em! [one_half] [/one_half] [one_half_last] Testing New CGD Treatments Just Got Easier [/one_half_last] [one_half] [/one_half] [one_half_last] The Most…
Positive Thoughts Kim Frederickson was diagnosed with pulmonary fibrosis (PF) in 2014. She has used her skills as an author to share her story. Her motto is to focus on…
Charis Hill believes that changes to the Affordable Care Act (ACA) may be the difference between living and dying. Charis currently gets insurance due to the ACA. She is worried…
You know that feeling when someone says a word that you don’t understand? It happens to people all the time. It might be your accountant right before tax time. It…
Sam Edwards was always exhausted. No matter how many hours of sleep he would get, he just could not stay awake. But as a professional race car driver, he needed…
Medicine is expensive. Most patients aren’t millionaires. It’s disheartening that treatments which could be so beneficial are out of reach for so many. It’s even more disheartening when their production…
Inspiration comes from many different places, but the best inspiration usually comes from seeing someone achieve greatness in the face of obstacles. That is exactly what a Navy midshipman by the…
Admittedly, I’m no expert when it comes to sickle cell disease, but after reading about an inspirational young woman who is forging on to live—and I mean LIVE—her life, I’d like…
About 1 in 3,000 babies are born with gastroschisis every year. Elliotte Sargent was born in September 2016 and is one of those babies. While in the womb, she was…
Many of us, especially men, define ourselves by the job we have. Don’t believe me? Ask a guy who he is. He will almost certainly answer with his job title.…
The coaches noticed teenager Amaris Tyynismaa during a 5K race as she ran past some of best distance runners in the South. They admired her long strides as she ran faster than…
The goal has always been to better manage and get a diagnosis earlier for inflammatory bowel diseases like ulcerative colitis and Crohn’s disease. The newest study at the University of…
Have you ever heard that we only use 10% of our brains? How about the fact that lightning never strikes the same place twice? Maybe you know the five-second rule.…
The MDS Foundation is hosting another wonderful event! Where: Memorial Sloan-Kettering Cancer Center Concourse Conference Room 480 Red Hill Road Middletown, NJ 07748 Presenters: Virginia Klimek, MD Kelley Anderson, RN…
Kiara Trussell thought her dreams of being a cheerleader would never happen. This is partly because Friedreich’s ataxia has made her wheelchair bound. Friedreich’s ataxia is a progressive neurological condition.…
The Chinese government is set to publish its first comprehensive list of rare diseases, with the aim to help policymakers improve diagnoses and speed up drug approvals. This comes on…
Tamara is a wife, mother of two, personal trainer, yoga instructor, nutrition coach, and a blogger. Furthermore, she shares her story about having Guillain–Barré Syndrome. When Tamara received her Guillain–Barré Syndrome…
Twenty-three teenagers living with rare diseases worked the runway at a recent fashion show in Texas. Sixteen-year-old Maggie, living with Von Willebrand disease, was one of the models for the…
Happy Friday Patient Worthians! This week we have two awesome contributions. One addresses grieving as a parent of a child with rare disease. Another addresses living with CRPS and other…
Storytelling holds immense power and, thus, is one of the best ways to raise awareness of rare diseases. Hanna Smith has a career as a journalist. Over the years, she has interviewed people…
The National Institute of Neurological Disorders and Stroke states Guillain-Barre syndrome (GBS) affects 1 in 100,000 people. Let that sink in. 1 in 100,000 equates to 0.001%. Compare that to the…
About 1 in 10,000 people are affected by hereditary angioedema (HAE)--and most don't have a clue that the condition even exists. HAE can be fatal, if not treated. Almost every family…
Moms: The ultimate multitaskers. Whether they're stay-at-home moms or working mom, these strong ladies have a way of getting stuff done, come hell or high water - or a chronic…
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.
