Hanna Gully was a girl with a dream: one day she was going to travel the world, and dare to do all of the things she had set her mind…
We recently posted an article discussing the positive connections between dystonia and depression (and Harry Potter, oddly enough). That was just one instance where researchers were finding interesting new treatment…
w an withIt’s kind of a badge of honor when a rare disease gets airtime on an internationally-loved television show. And maybe the doctors at Canada’s McGill University Health Centre…
At 23, Jessie Brenholt should be busy planning the rest of her life, such as marriage and having a family. Instead, the 2012 graduate of Le Cordon Bleu College of Culinary…
Did you know it’s NERVEmber? It all began in 2007. The Power of Pain Foundation created NERVEmber. November has become the month for the awareness of Complex Regional Pain Syndrome, or…
Hereditary angioedema may be a rare disease that qualifies for “orphan” drug status, but we are far from alone. There are HAE organizations and treatment facilities all over the world…
‘Tis the season! Picture it. Salem, Massachusetts. It’s 1692 and suddenly, things have gone horribly, horribly wrong for you. In the middle of the night, a small band of angry…
You won’t come across too many people in your lifetimes like Elaine Gomez and her daughter, Michelle DeMont. And you probably won’t come across anyone who has died, or nearly…
Ok, it’s time for an experiment. Grab a random group of people off the street and stick them in a room (make sure to ask first, please). Ask them to…
Serendipity (n): the occurrence and development of events by chance in a happy or beneficial way. As many of you probably know, the journey to a cystinosis diagnosis is no walk…
Patient Worthy contributor, Andrea, has wonderful recipes for a healthy, delicious ankylosing spondylitis diet ! Stay tuned for more! I often get a blank stare of resistance when I explain…
I’ve found that through all of this, my son has started asking, ‘How can I help? What can I do?’ In a way, those are the very things the Immune…
Dear strong one, I look at you and I see determination. Things are so hard for you right now, rushing from hospital to hospital. I know that you never imagined…
The Proclaimers said they would walk 500 miles for the one they love. This balloon does one better. In a blaze of purple, 600 balloons were released in the UK…
Think about it: clinical trials are like a huge strip tease. They're waiting to put it all out there, but if no one comes, it’s a huge waste of time…
For many people suffering from rare diseases, gene therapy offers the hope for relief and perhaps a cure for their particular condition. But while many studies are underway, to date, few drugs have…
Having a rare disease sucks, but sometimes it helps to cut your disease down to size mentally--especially if you can't do it physically! And, hey, laughing is better than crying,…
What are you going to be doing on the afternoon of Halloween? Some kind-hearted people will be participating in a walk, for a spooky great cause. On Saturday October 31st…
Ellicott City, Maryland | President Marcia Boyle has spent decades advocating for people with immune deficiencies. Her own son was diagnosed more than 30 years ago when he was an…
Imagine having a disorder that controls your movements. A disorder that causes painful muscle contractions that can’t be stopped. Imagine being in a wheelchair because of this....and wanting to dance.…
Aaron is a twenty-four year old college graduate living in Alabama. He’s an entrepreneur who majored in small business management. His father is a pastor and he has three siblings.…
When you’re young, healthy, and thriving, it’s hard to imagine that it’s possible to be taken down by a chronic disease, such as ankylosing spondylitis (AS). Like many young people,…
Do you ever have any burning questions about a rare disease that you’re just dying to know the answer? Us, too. Lots of ‘em. That's why we're presenting our list…
Not long ago, I read an article about a heroic father’s quest to fight injustice for his son who is living with a rare genetic autoimmune disease called familial cold…
Basically everybody has been affected by the high costs of healthcare at some point in their lifetime, and for many, not much changed when Obamacare (Affordable Care Act) came to…
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