As a child, Farrah Fontaine always knew she wasn't normal. Part of her family descends from the ancient Silk Road, which made her stand out in the Great White North. That's why she wants to give voice to the voiceless so they know they're not alone.
January is not a surprising month. It takes people a while to remember to write the correct year, your Facebook feed is full of people going hard at the gym,…
It's hard to believe it's already been about a month since the hemophilia A community received this exciting news! In case you missed it, there's a new drug that got…
If you've been looking for great psoriatic arthritis info, then you're in luck! We found an incredible website devoted to everything related to psoriatic arthritis. The aptly named psoriatic-arthritis.com is…
It's not unusual for a disease like psoriatic arthritis to come with the risk of having other conditions, or a comorbidity. More than you might think, people with psoriatic arthritis also…
Few things are as frustrating and complex as the health care system in the US. Even the current President admitted to that fact. So, like many people in the rare disease…
If you want to learn more about cryopyrin-associated periodic syndromes (CAPS), but don't know where to go, have no fear! We have found the perfect place for you! Systemic Autoinflammatory…
When it comes to autoinflammatory conditions, like CAPS, there is no one size fits all approach. There are a lot of variables--that's what makes these conditions so difficult to diagnosis,…
January is not a surprising month. It takes people a while to remember to write the correct year, your Facebook feed is full of people going hard at the gym,…
Do you ever have those moments where you're doing something that seems very routine, but then you realize with sudden clarity how much of it is affected by your chronic…
Every parent here knows that feeling of helplessness when you see your child in pain from a chronic rare disease that has no cure. Sara and her husband have experienced…
Imagine that one day you have a healthy, lively 5-year-old daughter. Then, in the span of two short weeks she's sick with a fever and rash and then spends 57…
It is a truth universally acknowledged that it's never easy having a rare disease. From Behcet's disease to cystinosis to idiopathic central precocious puberty, we all understand the pain, frustration, and…
Are you a person living with trigeminal neuralgia (TN)? Are you aware of the Facial Pain Association (FPA)? Well, you should be. This organization is incredible!! Focused on people with TN, this…
If you have Ehlers-Danlos Syndrome (EDS), life can get a bit complicated. Between doctors not knowing what you have to trying to figure out what treatments to use, it can…
When you have a rare disease like ankylosing spondylitis (AS), one of the most annoying things your doctor can say to you is: "Well, you need to exercise more." Why…
When you have a rare disease like complex regional pain syndrome (CRPS), sometimes it seems like doctors don't know anything about it. What's worse, it seems like a lot of…
Imagine being healthy one day, then hospitalized the next, and your way of life irrevocably changed? For many people with short bowel syndrome (SBS), that is exactly what has happened…
As more states open their arms to the wonders of marijuana (for medical purposes and for fun), they're also opening up a whole new way to look at treating rare…
In the case of an emergency, we're all taught to dial 911. We all assume that the police, firemen, or EMTs will be able to help us. But what if…
One of the (many) issues with having Behcet's disease is that very few of the medications we use on a daily basis have ever been studied in people with our…
How many people don't like going to the dentist? A lot. And how many people with Ehlers-Danlos Syndrome (EDS) hate going to the dentist? Most of them. Or at least…
Sunday October 2, 2016 was the IDF Walk For Primary Immunodeficiency (PI) in Boston, MA! As a partnership between the Immune Deficiency Foundation (IDF) and Shire Pharmaceuticals, this walk began at Boston…
If you, or someone you love, has Duchenne muscular dystrophy (DMD), then each new possible drug that's brought before the FDA brings with it a sense of hope. Race to…
When you were a kid and planning your future, what events did you imagine? Your first car? Your prom? Your graduation? Your wedding? For this boy with Duchenne muscular dystrophy, he…
When you get a diagnosis of a rare disease, like Ehler-Danlos Syndrome (EDS), trying to learn about it can be overwhelming. Where do you even start? Do you just start…
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