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…
Candace gathered her cards, launched "Oceans" in the background, and pressed play as she began to record a video explanation of her rare, frequently misunderstood disease, Common Variable Immune Deficiency…
For those who have Sjögren's syndrome, you don’t need the lowdown. But for those unfamiliar, it’s commonly associated with two main symptoms—dry eyes and a dry mouth. Why? Because certain…
One of the frustrating parts about having Behcet's disease is that it can affect so many different parts of your body. And unlike other conditions that may only need a…
Normally on #mememondays, we provide uplifting, funny, and sometimes just straight to the point memes that you can share all across the social universe for #mondaymotivation. This week we are…
You may already be familiar with the story of Todd Cendrosky, Todd Bachman, and Brittany Peck. As of this writing, the Facebook photos of the three have been liked by…
What do you do when you can't get the care you need? If it's an insurance issue holding you up, then you'll probably end up spending countless hours on the…
Right now, you and I are smack dab in the middle of one of history’s greatest information ages. We have more ways to learn about the world around us than…
13 years ago, after being diagnosed with a chronic illness, Lisa Copen couldn’t sleep. She was trying to figure out how to manage her new normal. She just wanted to…
My name is Lisa and I am living with rheumatoid arthritis (RA) and fibromyalgia. #myinvisiblefight is ongoing, but I have faith, family, and friends. This is my story. I was just…
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