On Saturday, April 29, 2017, a special event took place to honor women in the hemophilia community living in Idaho. Way to go, Idaho Chapter of the National Hemophilia Foundation! How…
June is hectic, with all those weddings and graduations. July is loud—firecrackers, political conventions, family reunions—and the humidity is stifling. But August, dear sweet lovely August? It might just be…
The National Health Council (NHC) and the National Organization for Rare Disorders (NORD) submitted a letter to Congressional leaders Friday - undersigned by over 120 patient advocacy organizations - urging…
Two years ago, Lucas wouldn't go anywhere near water. Last month, he tackled a swimming challenge, and he did so in support of a cause that's close to home. Lucas…
More than 35,000 Americans suffer from Huntington's disease (HD), a neurodegenerative disease. Eventually, HD destroys a person's ability to walk, talk, swallow, or have meaningful relationships with friends and family. Chorea is…
Maya Doyle of Quinnipiac University and Allison Werner-Lin of the University of Pennsylvania conducted a scientific research study to understand the experience of adults and emerging adults living with cystinosis. There…
As a registered nurse, I have taken care of a fair share of the senior population. I have heard some great stories and also some funny quotes. Several older individuals…
A quick search of the Internet will tell you that fatigue is a common symptom of almost every disease, disorder, and syndrome. There are other symptoms that tend to be…
Event Contact: Andrea Guidi [email protected] (518)262-5079 or (800)776-6539
Happy Friday Patient Worthians! You might notice that the headline has a lot of acronyms in it... ah, welcome to the rare disease world! We DO have answers for what all of that…
The pituitary gland is a pea-sized gland that acts as the body’s “master control” and governs the functioning of almost all of the other endocrine organs in the body. These are…
Having a difficult time finding resources on Friedreich's ataxia (FRDA)? Even for the generation that grew up with Google, keeping up with the news online can be tricky. You’ve got…
When people think of the monumental achievements of science, most think of landing a man on the moon and bringing him home again. That is an impressive feat. However, science…
Juvenile idiopathic arthritis (JIA) is the most common form of arthritis in children. It occurs when the body's autoimmune system attacks healthy tissue and causes inflammation of the joints. What triggers…
With the rise of medical advancements, you would think that fewer people would end up with short bowel syndrome (SBS). Yet, that is not the case. The reason for developing SBS…
National Center for Advancing Translational Sciences (NCATS) is a division of the NIH, located in Bethesda MD. On Friday June 30th they will have an all day program to discuss…
One teenager with Hunter syndrome doesn't let anything hold him back. This doesn't go unnoticed. Hunter syndrome is a rare inherited disorder which prevents production of a key enzyme that…
Christmas 2016 seems like a lifetime ago. In fact, I can't figure out if my hair grows twice as fast as it used to, or if time is passing at…
At the 2017 MGFA conference a panel consisting of Bruce Yelverton (Myasthenia gravis [MG] patient and retired paramedic and EMS director), Sally O'Meara (MG patient and registered nurse), and Shannon…
When your lungs aren’t getting enough oxygen, it’s a real problem. A big problem, especially, when a person is living with idiopathic pulmonary fibrosis (IPF). But that’s not the only…
Sometimes, the path to diagnosis takes many twists and turns. This is true for people who have Primary Biliary Cholangitis (PBC), according to Gail from the PBC Society of Canada. In this video, she…
According to an article from Rare Disease Report, a brand new app has been created for sarcoidosis patients. Created by Misha Rosenbach, the app was developed in partnership with the Foundation for Sarcoidosis Research.…
Everyone has a story. Every person has something that they can share. Reading about another person’s story can help you and your family cope with Hunter syndrome. Also, learning about…
A few years ago, a friend of mine who is a violinist suddenly developed a movement disorder called focal dystonia. His neck began to have intermittent muscle contractions. His head would…
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