Basically everybody has been affected by the high costs of healthcare at some point in their lifetime, and for many, not much changed when Obamacare (Affordable Care Act) came to…
Candace gathered her cards, launched "Oceans" in the background, and pressed play as she began to record a video explanation of her rare, frequently misunderstood disease, Common Variable Immune Deficiency…
For those who have Sjögren's syndrome, you don’t need the lowdown. But for those unfamiliar, it’s commonly associated with two main symptoms—dry eyes and a dry mouth. Why? Because certain…
One of the frustrating parts about having Behcet's disease is that it can affect so many different parts of your body. And unlike other conditions that may only need a…
Normally on #mememondays, we provide uplifting, funny, and sometimes just straight to the point memes that you can share all across the social universe for #mondaymotivation. This week we are…
You may already be familiar with the story of Todd Cendrosky, Todd Bachman, and Brittany Peck. As of this writing, the Facebook photos of the three have been liked by…
What do you do when you can't get the care you need? If it's an insurance issue holding you up, then you'll probably end up spending countless hours on the…
Right now, you and I are smack dab in the middle of one of history’s greatest information ages. We have more ways to learn about the world around us than…
13 years ago, after being diagnosed with a chronic illness, Lisa Copen couldn’t sleep. She was trying to figure out how to manage her new normal. She just wanted to…
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…
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…
Patient Worthy attended the EveryLife Foundation’s annual forum this past Tuesday in Washington, DC. It was a full day workshop about why incorporating the patient perspective into the various phases of developing drugs…
People often debate whether things in life happen by fate, or by chance As explained on the UC Neuroscience website, all Jim knows is that a lot of coincidences had…
Sometimes a bit of skepticism is a good thing. RareConnect.org reports this was definitely true for Tina and Fernando when their sweet little boy, Nico, was diagnosed with epilepsy. At…
This Michelle Tanner look-alike (she even knows the signature "you got it, dude!") is one of the brave faces of GLUT1 DS. RareConnect.org describes Gracie as a bubbly, strong willed three…
What does roasted corn have to do with cystinosis? If you're scratching your head, don't worry: At first, we were too. But in Buffalo Grove, IL, an annual Corn Roast sponsored by…
Recent twitter developments in the Chronic community have involved the possible discovery of a new mascot. Karl Austin (@Porkchop275) came across a picture of a shark, and after determining that…
Anyone diagnosed with a chronic illness has two choices. Option 1: Accept it, live life idly, and wait to meet your maker. OR Option 2: Accept it, learn what the…
Think you know all there is to know about ankylosing spondylitis (AS)? Think again. New research has revealed that people with AS are at a greater risk for having acute anterior…
Amanda struggled for years to understand the pain and swelling that she kept experiencing. Her doctors couldn't figure out was wrong and she never knew why her throat would sometimes…
Why Pharma cares more and more about Rare Diseases Congress. The FDA. Patient Advocates. And Venture Philanthropy. When it comes to rare diseases, medicines haven't always been readily available. A…
Meet Yoni Masel- RareDisease Patient, Advocate, Activist & Blogger His goal: To raise awareness for rare diseases, and to help others by educating and sharing #PatientWorthy information. Yoni Maisel (Yonatan Maisel)…
You can lead a healthier lifestyle and help decrease some of your A.S. symptoms and frequency of flare ups by following these steps. 1. Exercise [iframe src="http://giphy.com/embed/NnwBN2NdkVx5K" width="500" height="237" frameBorder="0"…
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