A record amount of dollars is heading to help those fighting Waldenstrom’s macroglobulinemia (WM). According to its website, for the first time, the International Waldenstrom’s Macroglobulinemia Foundation (IWMF) approved $2.2…
"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.…
Chances are you grew up with the fragrant scent of baby powder perfuming the air. Your mom may have used it to prevent your diaper rash or to sooth herself…
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…
We've all heard it before: "Stay positive! Look on the bright side! Don't let the little things get you down!" The fact of the matter is it's way easier to…
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…
Mantle Cell Lymphoma (MCL) is a very rare cancer of the blood. So rare in fact, that there are only 4,200 cases diagnosed in the U.S. each year and…
On September 28th, 2017 at 9 PM EST, a new online, mindfulness-based, stress reduction course will be given by none other than the extraordinary Julie Desch, MD. She is a physician…
Odds are someone you know has a chronic, even debilitating illness, but you probably have no clue how it's affecting his/her life. Just because a condition isn't obvious doesn't mean…
The human brain is a mystery. Although enormous strides have been made to understand how it works and how our neuro pathways respond to various stimuli, there is still so…
Quite possibly, one of the most challenging attitudes to embrace is self-compassion. It should be easy enough to adopt simple self-love into our lives, but it truly is where the…
"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…
The Indiana Hemophilia & Thrombosis Center in Indianapolis has long been a leader in innovative patient care. They teamed up with MicroHealth, a company founded by hemophilia patient Aaron Craig…
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…
In the world of medical science, there's theory and there's application. Many scientists and researcher make amazing discoveries, but few find applications that can really transform lives. Hans Clevers is…
In our derisive political environment, it's hard to find something everyone can agree on. But this month--Ovarian Cancer Awareness month, to be exact--party lines are coming together to heighten knowledge about…
Okay... I'll be the first to admit my diet needs improving. I'm more likely to reach for a bag of chips than a bag of carrots and, if I'm hungry,…
Most people do not enjoy going to the dentist, but for patients with down syndrome, this normal task is even more of an ordeal. Patients often have a difficult time…
If you are living with myasthenia gravis (MG) or any other rare disease or medical condition, you may have the travel bug, and travel insurance may be worth the investigation. Let’s…
When you need help with a problem, where do you turn? Many people these days turn immediately to the internet. From Googling to settle a bet to researching a doctoral…
Exciting research is happening right now that could help thousands of children around the world with cystic fibrosis (CF). A group of scientists and researchers in Australia are determined to…
An easier diagnosis may be coming for ulcerative colitis patients, as researchers at Georgia State University recently used a special type of spectroscopy to examine the blood serum of mice…
© 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.
