My name is Lisa. I am a 3x cancer survivor thriver, and I am living with the rare autoimmune disease Myasthenia Gravis. I am a mother, a wife and an…
My name is Bonnie and I’ve been fighting for my life for eighteen years, but I have been fighting an invisible fight for the past twelve. This is #myinvisiblefight story.…
My name is Shelly. I am a Christian, a wife, a mom, and a writer- a published author in fact, and that is how the world knows me. But the…
I'm Maria; I'm a wife and mother, fashionista and shoe enthusiast. Not all of my days are bad, but no one knows about the really bad days because I hide…
Meet Melissa, a wife, mother and advocate. Patient Worthy interviewed Melissa about her #InvisibleIllness - gastroparesis. Almost two years ago, un-welcomed and without warning, gastroparesis enetered Melissa's life. “I was fine one day…
This is my son Oakley, a five year old with an adorable smile, who loves the Ninja Turtles, and you'd never guess what we've been through. My little man has…
It's #IIWK15 (Invisible Illness Awareness Week) and it's impossible for us to be more pumped about it! If you have no idea what #IIWK15 is all about, check out blogger…
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…
This introduction to Invisible Illness Awareness Week or as we like to call it #IIWK15 was written for publication on Patient Worthy by Lisa Copen, the founder and director of II…
Check out and pass along the Editor's Choice articles of the week! [one_half] [/one_half] [one_half_last] Learn why this Viral Message is so Important After a waitress took her speech and…
Just like breaking up with your significant other can be hard to do, so can breaking up with your doctor. After all, he or she may have been with you…
It's September! You know what that means? Happy "Dystonia Awareness Month!" Maybe "Happy" is the wrong word... Because, while spreading awareness is always something to cheer about, dystonia is not. Here…
Thank goodness for the 21st Century! If you have been dying to attend this year's Global Genes Patient Advocacy Summit in California, but there's no way you are making it…
If you’ve been suffering from high cholesterol with dismally low-density lipoprotein (LDL) scores, here’s some breaking news that could save your life! The FDA has announced the approval of a…
Cysteamine Bitartrate is its name, and savin’ lives is its game. It’s not often that you hear a drug referred to as “life-saving” (probably due to legal ramifications), but that’s…
We know that overexposure to the sun cause a serious burn-peel situation, but did you know that the sun can be especially risky for those with a predisposition to developing…
Time is running out! Join us before September ends to make the ninth month of the calendar Dystonia Awareness Month. If you haven't already..... #signtheDAMpetition Guest Blogger: Pamela Sloate provides…
Rare Connect explains the life of Annie Kwakkel who was born with cystinosis, a genetic condition that affects approximates 1 in 100,00 to 200,000 newborns worldwide. Today, people living with…
"A protruding brow, lantern jaw, thick leg and arm bones", and incredibly crowded teeth were all characteristics of a recently found 3,800-year-old skeleton as reported by Western Digs. Each feature…
In July, Patient Worthy published BREAKING news about ADMA Biologics, Inc.'s promising new drug; RI-002, a specialty IGIV treatment for patients who are immune-compromised. RI-002 data proved the drug's ability to prevent…
The National Health Council and The Genetic Alliance are asserting the need for further patient engagement and incorporation of patient perspectives in drug development and the pharmaceutical industry. In…
September is almost over! #signtheDAMpetition Guest Blogger: Pamela Sloate airs some of her neurological dirty laundry in her original blog post, Dis*ease Unease. For most of my life, I’ve been…
Meet Brittany! Brittany was disheartened after going to a restaurant and having the waitress completely ignore her when Dystonia made it difficult for her to enunciate. After first relocating to…
On Tuesday September 15th, several members of the Patient Worthy team were attending the Annual Rare Disease Scientific Workshop hosted by the EveryLife Foundation for Rare Diseases. The topic this…
This Meme Monday here are some funny and encouraging memes to share with your friends and family, no matter the rare condition. All that we ask is when you share…
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