Recently, the FDA gave "breakthrough therapy" status to a potential new drug that may help prevent HAE attacks. But how does that affect you, the patient? What does "breakthrough therapy" really mean?…
Familial hypercholesterolemia (FH), a genetic disorder associated with extremely high levels of LDL cholesterol, can be frightening. Many people are diagnosed in infancy, and it’s not uncommon for even children…
In case you didn’t know, October 11-17, 2015 marks the third anniversary of commemorating International Plasma Awareness Week. Sure, you might think that it’s just another ho-hum “awareness week” but…
To SubQ, or not to SubQ? That is a question many people living with chronic illnesses face at some point in their lives. For some, subcutaneous injection (SubQ) is the…
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…
When this Arkansas community rallies, they conquer. TJ Cluck was one of the thousands of people involved in the Joplin Tornado, a devastating EF5 twister that killed 161 people in…
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…
We all know that an early diagnosis can save lives. But, in an unexpected turn, this mother’s late diagnosis is what saved her son. RareConnect.org details the story of Malinda…
If you’re one of the small number of people living with acromegaly symptoms today (an estimated 60 out of every million people worldwide), we’ve got some good news for you.…
For those of us who grew up in the 1970s and 1980s, the phrase “Bubble Boy” zaps us right back to a sharp mental image that will always stick with…
Earlier this year, the FDA took bold steps, launching them closer to efficient rare disease drug development. And now, the potential improvement for rare disease patients could be huge. Why?…
Does the name Myasthenia Gravis sound slightly familiar? Probably not, but if you're a fan of the show #Empire, you came across it when Lucious Lyon was famously diagnosed with…
In recognition of Back to the Future day, the exact date that Marty Mcfly traveled to in 1985, The Micheal J. Fox Foundation and the White House are encouraging speculation…
To all of the friends and families of people who have narcolepsy or symptoms of narcolepsy: LISTEN UP! In case you weren’t aware, narcolepsy is a serious and chronic, yet…
California is home to a large number of amusement parks that are beloved by thousands of children and their families. Of course we love theme parks; it’s American as apple…
Eight years ago, Gina Rosendall-Saucedo received a diagnosis for her persistent movement disorder that she never expected. After an 18-month search for answers, she finally had one, but it was…
Here at PatientWorthy, we think laughter can be the best medicine. Ironic humor is sorta our thing. But to those easily offended, or perhaps even moderately intolerant, we suggest you…
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.…
Going off to college is a big change for anyone. You’re likely living in a new city, dwelling in a new room, and surrounded by hundreds, if not thousands, of…
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,…
In this account, from Philly.com, Dr. Thomas Klein, allergist and immunologist, describes his problem. A mystery had come across his path that he didn't think he could solve. He was seeing…
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…
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