In March, Delaware became the latest state to propose bills aimed at either combating Lyme disease or requiring expanded insurance coverage for the disease. Leaders in the state—which has one of…
I recently read an interesting article about a new drug for hemophilia B called: Idelvion [Coagulation Factor IX (Recombinant), Albumin Fusion Protein] which I highly recommend that you read. It…
Could it be? Could it REALLY be true? A breakthrough treatment for Lyme disease is here?! Well, according to what I read on the PR Newswire, it is. A specialty…
Students at North Carolina State aren’t letting the grass grow beneath their feet, knowing their feet can make a difference in a sick child’s life. At a recent dance marathon…
What’s it going to take before an effective treatment gets approved by the FDA for acute and aggressive mastocytosis? Well, hopefully the mastocytosis community won’t have to wait too long! In…
Does this word "Musashi-2" mean anything to you? If you suffer from aplastic anemia, it may be the most important phrase you'll ever learn. Scientists are very familiar with Musashi-2 and…
I recently read an article about Hemophilia A and B from the Cleveland Clinic. I thought it was incredibly helpful because, sometimes, I get confused about the differences between the…
Raptor Pharmaceuticals, the makers of the cystinosis-treating medication known as PROCYSBI®, go above and beyond for the people they serve. If you have a child with cystinosis (or any chronic disease…
If you’re one of the people in the United States diagnosed with Behcet’s Disease, the odds are extremely high you’re the only person living with that disease in your city,…
Rare conditions are difficult on so many different levels. It’s hard to find someone who can relate, to find a physician who is familiar with the treatment options, and to…
Dutch-American Reality TV star Yolanda Hadid, who is widely known for her supporting role on The Real Housewives of Beverly Hills, announced in the fall of 2015 that she was diagnosed…
When you have a rare disease, your money goes to a lot of different things that people without health problems don't have to cover. Like medicine. Or therapy. Or hospitalizations. Or...…
Let's be real... it personally offends me that Raptor Pharmaceuticals' logo isn't a velociraptor. Like, that is a missed golden opportunity. I'm just saying... there are a lot of drugs out…
What are parents’ hopes for their children? Typically a happy, successful and long life. Children are often asked what they want to be when they grow up... but the growing…
Happy Almost Mother's Day Patient Worthians! This week is PACKED with announcements. First of all, it's Lyme disease Awareness Month, Cystinosis Awareness Month, Cystic Fibrosis Awareness Month, and Behcet's Awareness…
Strapped for cash after a cystinosis diagnosis? Listen to this! There is a scholarship available to lighten the load of families who are dealing with the challenges that accompany cystinosis.…
Ankylosing spondylitis is a rare, autoimmune disorder. It is a chronic form of inflammatory arthritis that primarily affects the base of the spine, bones and joints. It has also been referred…
Michael J. Fox was the known for years as the teenage financial wizard on the television series, Family Ties. Later he went on to become a time traveling teen in…
The steely visage of our seventh president Andrew Jackson will disappear from the face of the $20 bill. Yes, “Old Hickory” has been fired from top billing on the venerable $20 note…
It's that time of year, again, folks. Yep, it's time to CHECK FOR TICKS! These tiny little predators can pack quite a wallop if you get hooked up with the…
Finding treatment for a rare disease like CVID can feel like a dice roll. How can you find an effective treatment if doctors don't know exactly what's wrong with you? Dr. Harry…
Becoming a parent can be exciting and terrifying in nearly equal measures—along with the thrill, anticipation, and joy, there’s the fear of what could go wrong. Worrying about your child’s…
There are lots of things you want to pass down to your kids: Intelligence Athletic ability Creative talent Amazing good looks Pompe disease isn’t one of them. Pompe disease occurs…
Congrats Patient Worthians! You made it to Friday! This week we have some interesting Myasthenia Gravis pain remedies. Additionally, we have a pretty sweet Acromegaly poster designed by one of our…
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