When I see a rubber boat and a headline with “boy” in it, I freeze. Can I bear to see another heartbreaking story on refugees in need of help? Thankfully, this was…
Learning more about your rare disease, like PAH (pulmonary arterial hypertension), can be confusing. Do you find a small support group? A big event? Do they even have those? Yes,…
Classified as a "chronic movement disorder," dystonia may appear to some as a disease of the muscles. Like it's cousin Parkinson's disease, however, dystonia is actually a neurological defect. While it's…
What does pulmonary fibrosis, or scarring of the lungs, have to do with blood? Probably more than I'm aware, because when I first saw that a biopharma company specializing in…
Last November, Janet Woodcock - the Director for the FDA's Center for Drug Evaluation and Research - gave the keynote address at the Pulmonary Fibrosis Foundation's summit in Washington, D.C.…
If this makes sense to you, “Hey, look! Some dude on a sponge has wiped out and is going over the falls on a hollow little right!” then you need…
Autumn is going to be a fun time for people interested in supporting essential research for amyloidosis. Amyloidosis is a group of about 15 rare, progressive, and incurable diseases of…
Picture this: You walk into a lab and find these slimy-looking, colorful blobs sitting in petri dishes. You get closer. Closer. The blobs take shape; they are livers, kidneys, and…
Channel your inner Mickey and put those big ears to the ground! What’s that you hear? Why, it’s the sound of a whole lotta cutting-edge, exciting resources from the hemophilia community heading to…
Calling all residents of the Mitten State (also known as Michigan) who live with, or care about, someone suffering from dysautonomia or gastroparesis! Sunday, July 10th is the time to party…
MPS Awareness Day has come and gone, but that won't stop us from spreading information! In honor of MPS Awareness Day (which took place on May 15th), we'd like to do…
A May 25, 2016 article from Pulmonary Fibrosis News reports that Italian researchers are making headway in determining if a person’s IPF is progressing or not (which is in the…
There's good news for people living with carnitine palmitoyltransferase (CPT) deficiency and their caregivers! Ultragenyx recently released data from an open-label study of the treatment triheptanoin. In the study, five infants…
Come one, come all! Well, if you have mucopolysaccharide (MPS), that is. The 30th Annual Family Conference is taking place this August in Colombus, Ohio and the National MPS Society…
The Myasthenia Gravis Foundation of Illinois is hosting the 2016 Strides Against MG Walk. This will be the foundation's fourth year hosting, so needless to say, they know what they're doing.…
In the ongoing fight against cancer and all its various forms and permutations, all doctors can agree that a timely diagnosis is critical to successfully slowing or halting the spread…
According to the Center for Disease Control, there were nearly 35,000 cases of Lyme disease reported in the United States in 2014 (the most recent year on record). While that…
Have a rare disease? Have you ever been to a national patient conference? These are invaluable opportunities to connect with others who share your challenges and concerns! Imagine being in…
Those of you who know your Greek mythology know that Achilles was a mighty fighter in the Trojan War who only had one weak spot: his heel. Apparently his mother…
The Immune Deficiency Foundation (IDF) is a fabulous resource for anyone living with primary immunodeficiencies (PI). On May 12 at 8 PM Eastern Time, the IDF will host an informative…
Continuing medical education courses (or CMEs) are educational events designed to keep medical professionals up to date on the latest information in their fields. These professionals earn credits toward their ongoing…
Let's say you broke your left ankle three years ago, and according to all x-rays, it healed beautifully. So why are you still in pain? And not just a dull…
Have Lyme disease and want to to learn more about it? What about meeting other people with Lyme disease? Sound like something you're into? Come out to the 10th annual Lyme…
Pulmonary arterial hypertension (PAH) is a form of high blood pressure affecting the arteries in the lungs and the right side of the heart. The disease is characterized by increased blood pressure…
The FDA told Chiasma Inc. that they needed to conduct another clinical trial to gather more "sufficient data". Despite receiving a complete response letter void of any safety concerns from…
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