Back in 2015 I was diagnosed with POTS, a form of dysautonomia. Dysauto-what? Yeah, exactly what I was thinking. After doing all my research and being super upset at what…
While there is good scientific evidence backing up the fact that omega-3 fatty acids found in fish oil can help slow or even prevent heart disease, but does fish oil…
Milestones. Oh, the firsts! When you have a new baby, your whole life revolves around firsts: first bath, first smile, first tooth, first roll, first uninterrupted night of sleep (yes!).…
Over the years, I've talked with dozens of people with Parkinson's disease (PD). Male or female, old or young, they tend to have one characteristic in common, even if they…
Ron Taylor is a smoker who has the lungs of a 126-year-old man. According to the Alpha-1 Foundation's website and the Memorial University Gazette, his diagnosis started when he went…
October is a time for celebrating autumn and Halloween in the US. But it's also Gaucher Disease Awareness Month! Mark your calendars for this Gaucher Disease event: Who: The National…
I am a firm believer that amidst all the fads that come and go, there is one trend that will always be popular. This, of course, is the do-it-yourself craze…
Another great breakthrough in research science! A new study found that an experimental drug combined with the traditional chemotherapy drug cisplatin successfully eliminated a rare salivary gland tumor and prevented a recurrence…
Damien took a lot of naps. I mean, a lot! It’s true; he was a very active Doberman Pinscher. He fetched everything—tennis balls, Frisbees, shoes that hadn't been put away—you…
I have worked in the healthcare industry for thirty years; the past eighteen as a specialist nurse. In all those years I have never once heard of SD. Diagnosis is…
As autoimmune disorders become an increasing problem throughout the world, particularly in developed countries, there has been an increasing amount of research dedicated to finding a cure, and the role…
The Familial Hypercholesterolemia Foundation's main mission is to raise awareness of familial hypercholesterolemia (FH) to the public. As part of this goal, the FH Foundation annually hosts Familial Hypercholesterolemia Awareness…
Recent studies have shown promising results that cannabidiol (CBD) helps relieve different forms of epileptic seizures like those from Lennox-Gastaut syndrome and Dravet syndrome. Lennox–Gastaut syndrome (LGS) is particularly severe, childhood…
One of my favorite places to visit is Savannah, Georgia. And what better reason to visit than an spinal muscular atrophy (SMA) charity event? Who: SMA Angels What: SMA Angels Charity Ball…
The Liv-A-Little Foundation is painting the town purple this August in the name of cystinosis awareness! Cystinosis is a genetic disorder that causes the build-up and crystallization of the amino…
Sad news today as the world mourns comedian and Muscular Dystrophy Advocate Jerry Lewis' death. The director/producer died at the age of 91. Jerry Lewis was a 1960's movie star…
In breaking news for the progeria community, biomedical engineers have just succeeded in growing miniature human blood vessels that mimic progeria, the ultra-rare genetic condition characterized by premature aging in…
Most kids love robots. So the idea that a kid with cerebral palsy (CP) could improve the way he or she walks with the help of a robot is just…
If you’re anything like me, you probably don’t remember much about the work you did 20 years ago. And unless you’re a pack rat, chances are you can’t even lay…
Even though August is officially Psoriasis Awareness Month, Healthline recently put together a list of the top online advocates in the psoriasis community that are bringing awareness all year. Here…
As a child of the 70s and 80s, I’ve lived long enough to see my geeky obsessions burst out of the shadows into mainstream pop culture and profitability. Take comic…
Patient Worthy Partner and rare cancer advocacy group The International Waldenstrom's Macroglobulinemia Foundation (IWMF) is partnering with CancerCare to bring you an event on October 4th that you won't want…
Happy Friday! This week, we have an inspiring story about a woman who is battling cystic fibrosis but she's river dancing her way through it! We also have some news…
The concept of “race” occupies a perilous crossroads at this moment in American history. Some would argue that we live in a “post-racial” world since the election and re-election of…
Acute diagnosis is the Holy Grail for all illnesses and conditions. But what if you could predict the likelihood that you would develop a deadly disease and take steps to…
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.
