Do you know the symptoms of ovarian cancer? If someone asked you to list the symptoms right now, could you? If you were experiencing symptoms of ovarian cancer yourself, would…
For the estimated 100,000 to 200,000 people in the US diagnosed with idiopathic pulmonary fibrosis (IPF), finding a community is important. IPF is a rare lung disease, which you can…
Start a conversation - and look a little snazzy while doing so! - by wearing purple today (February 2nd) to raise aware for neuroblastoma. Neuroblastoma is a rare cancer that…
As an adult living with rare disease, there have been significant gaps in my employment history. I am sure many adults with health complications experience their workforce years this way,…
When you are in the midst of difficult times in your life, what do you do to make it through? Do you try and find a way to hide out…
WASHINGTON, D.C. & SAN DIEGO — Children’s National Health System and Retrophin, Inc. (NASDAQ: RTRX) are pleased to announce the creation of the Retrophin Rare Disease Network at Children’s National.…
The Cystinosis Research Network (CRN) is offering scholarships to prospective college students who have been impacted by the condition. The organization offers two different scholarships, one for a student that…
1. Rare Neuromuscular Disease Primary periodic paralysis (PPP) is group of rare neuromuscular diseases characterized by disrupted communication between nerves cells and skeletal muscles. PPP is a result of failures…
MonARC Bionetworks and the Pulmonary Fibrosis Foundation have partnered to bring the IPF community the PF Health app - a monumental partnership that will bring clinical research opportunities directly to…
Chronic granulomatous disease (CGD) is a rare inherited primary immunodeficiency disorder that impairs the body’s ability to kill certain bacteria and fungi. As a result, people with CGD are at…
Ninety years ago, when Sir Alexander Fleming discovered that bacteria left in a petri dish was killed by mold, a revolution in modern medicine began. Since 1928, penicillin and other…
Hofstra is one college campus that gives students with disabilities the support and accommodations they need. They even have their own program called Student Access Services (SAS). The program is…
For those people struggling with GNE myopathy, there is someone who wants to hear from you. Whether you’re a patient or a loved one of someone with this rare disease,…
When you have a rare disease like Friedreich ataxia (FA), which affects only 50,000 people in the United States, it is pretty easy to feel alone and isolated. Usually, the…
Living with a chronic illness is hard enough. When you have juvenile idiopathic arthritis, you learn to manage pain and health issues at an age when most of your peers…
Happy November! This is one of my favorite times of the year with the clean, crisp air and the leaves changing color. However, I am not a fan of the shorter…
Have you ever really considered everything your kidneys do? Can’t recall that Biology 101 class, huh? When you have a rare disease like amyloidosis, the danger of developing chronic kidney…
Looking different as a kid (or adult) can have a serious impact on your self-esteem, particularly if you’re dealing with something that also affects your health. Hair loss due to…
Scleroderma, which is chronic hardening and tightening of the skin and connective tissues, can have a huge influence on the body, both mentally and physically. According to Andrea Peixoto, in…
For better or for worse, dating has become increasingly dependent on swiping, matching, and shaking your phone. We live in a world of pings, messages, and alerts. The smartphone dating…
Can you have too much of a good thing? Yes! Potassium, for one. It's an important mineral for human beings, essential for helping cells function normally. And that's just the start.…
Gatorade and other sports drink commercials often feature super athletes pushing themselves to the point of exhaustion, taking a swig from a sports drink, and then rallying to set new…
Two-year-old Clark Cutler's parents felt alone when dealing with his rare disease, until they stumbled upon the United Leukodystrophy Foundation. Clark was diagnosed with Pelizaeus-Merzbacher disease when he was just…
In general, sarcoidosis can affect various organs in the body including the lungs. Sarcoidosis causes granulomas, which are tiny masses of tissue clusters, to form. This leads to malfunctioning or…
Are you grateful for bile? You should be. But chances are you never think about the importance of this chemical compound that's found in the liver--until it's not there, or…
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