The eternal struggle of finding a treatment that works for you is a complex and infuriating process (as evidenced by a Managed Health Executive article). Not everyone’s body responds to…
Come join Global Genes in attending the 6th annual rare patient advocacy summit Meet rare disease advocates from all over the world in an educational conference setting to create, share,…
Recently on Recombine, a website dedicated to providing up-to-date blog posts about planning a healthy family, a story popped up from a young woman sharing her experiences about being a…
Everyone seems to have Epstein-Barr in my family. My mom, who has celiac disease and sciatica, and my sister, who has lichen sclerosis. Given that typical MDs don't seem to have…
I hate to be a killjoy, I really do. And I hate being an alarmist even more. Trust me, I know there’s nothing more annoying than that one guy who…
I don’t think it comes as a shock to anyone to say the costs of drugs are too damn high. The rarer the disease, and the smaller the patient population,…
What do you do when your four-year-old daughter first notices a man with a prosthetic leg? A coworker picked up the story in a grocery store when his little girl…
Come out to D.C. for a day full of rare disease news and seminars given by many accomplished MDs, PhDs, and CEOs! The full agenda can be found here. Registration…
I second-guess every decision I make. Should I wear my hair pulled back, or will it just flop in my face all day long? Should I wear heels and risk…
Prepping for bedtime in my house is like going into battle. The children are provided the first warning around 7:30 p.m. From that moment forward, everything revolves around the mission-critical…
You know the Internet meme: There’s a woman, head in hand, silently weeping, or James Van Der Beek, from his Dawson’s Creek days, on the edge of crying big elephant…
Parents strive to make a child’s life better—even before the baby bundle comes into this world. The sacrifices parents make for their children are innumerable, and one dad from Mississippi…
Only 1 in every 250 people have familial hypercholesterolemia (FH) worldwide and it is widely underdiagnosed with more than 90% of people not knowing they have it. In fact, according…
You know the best thing about a 3-day weekend? A 4-day work-week! We hope you had a fun and safe Labor Day Weekend here in the states. How do you…
"The Troubles" in Ireland/Northern Ireland go back to the 1700s, and they were aptly named. There's been a lot of fighting on both sides—those sides being the Irish and the English.…
Duchenne muscular dystrophy is most common in males, and is characterized by muscle weakness that progresses over time. Onset is as early as three years of age and the life…
I sat behind Bobby in Basic Algebra class, room 17. We were both 15 years old. Each day of class, we’d manage a polite “Hey.” Then one day he wasn’t…
Come check out and celebrate the launch of and learn more about the NCATS online resource portal including: How to establish a patient registry How to drive patient-focused discovery and…
Your Sunshine State Getaway The 2017 Annual MDF Annual Conference Registration fee: $200-$250 — covers all conference events (general and breakout sessions, two evening social receptions, and other informational and…
September is National Blood Cancer Awareness Month and September 15th is World Lymphoma Awareness Day. To find out more, check out the Lymphoma Research Foundation (LRF). Not only does this…
Rare diseases like ALS and SMA cause damage to motor neurons. Often, these conditions lead to death, in part because muscles in the chest are wasted away and the patient…
"Be strong," they say. "Don't give up." However well-meaning the sentiment, those phrases sometimes ring empty. What does it even mean to be strong? To persevere? I think Jackie Barber's story…
When I first read this story in Fortune about the Zika Virus potentially being used to treat a rare form of deadly brain cancer called glioblastoma, I immediately thought of…
This year marks the end of a second decade of achievements for EURORDIS, now formally known as EURORDIS-Rare Diseases Europe. EURORDIS is a non-governmental alliance that is the voice of…
The International Foundation for Functional Gastrointestinal Disorders website has a section where patients can share their story. Hollie's story is one of the featured stories. Her story starts in 2009…
© 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.
