Happy Thursday, Friends! Welcome to November! This week we're highlighting stories two stories from rare patients in the Czech Republic. We also have a story about two girls in South…
"It’s like when you suddenly shut off control over your muscles. Your will can’t affect it at all. “I say that I’m a ‘physical schizophrenic,’ and I can only do…
Boo! We hope everyone's trick or treat bag was heavy on Reese's this year! This week we're highlighting stories about a youth advocate, gene therapy, and a multiple sclerosis predictor.…
That’s right- HOBSCOTCH NOT hopscotch, and you don’t need a sidewalk and chalk to play it. The Epilepsy Foundation of Virginia (EFVA) has been looking out for you, and applied…
As a second year pre-medical student at Northeastern University, my desire to become a healthcare professional flourishes every day. An advantage of being a student who is just beginning to…
Happy Thursday! This week we're highlighting four patient stories: a woman managing her HAE symptoms, a singer with a scary diagnosis, a Bechet patient building support networks, and a CIDP…
Teresa Scruton is not a physican nor a nutritionist but she has been a person with hereditary angioedema (HAE) as well as a researcher for many years. Below she shares…
Do you want to participate in your wellbeing and in your medical care? Do you want your health care providers to share your data with you? Do you want…
Bohuslav Skoupý had trouble with his kidneys. He even had a transplant. He also had heart problems. In the end, it turned out actually by chance that Fabry disease was…
Happy Thursday! It's cold and flu season around our parts, so we hope everyone reading this has dodged the fall viruses! This week, we're sharing a recap of a Global…
Happy October! This week, we're sharing an article on a PKD treatment update. We also have news about a famous singer who shared her rare disease story recently, a piece…
According to a story from the Cystic Fibrosis Foundation's Community Blog, the internet allows for access to a trove of knowledge and information literally at your fingertips. This had naturally…
‘The future is here, it’s just not very evenly distributed’ William Gibson These days there’s much more literature about mal de debarquement syndrome (MdDS) and this resource gives excellent information…
I am a 63 widow, with 2 grown kids. I have pure autonomic failure, which you can read more about here. I went on disability in 2004; it took 4…
By: Teresa Scruton Hereditary Angiodema Abdominal Attacks There are 3 types of Hereditary Angiodema (HAE) abdominal attacks: Lower abdominal - swelling in wall of colon (large bowel), that causes the…
Living life as a rare individual and patient has its challenges day to day. The best feeling in the world, though, is having support: being around people who know what…
“I have cried a lot more in the last ten years of my life than ever before.” A parental odyssey of rare disease, in two of their three children, and…
Happy Thursday everyone! This week, we're sharing a video that will warm your heart, as well as an article about how to improve care in older Multiple Myeloma patients. We…
Happy Thursday everyone! This week, we're highlights two stories about patients taking action to solve problems in their life: one patient innovates to improve their care, and another starts a…
First, I want to be clear-- I'm neither a doctor nor astrologer. This listicle is just for fun! Rare diseases are not Zodiac signs, and are tremendously challenging situations to…
Happy Thursday everyone! We're seeing more and more leaves falling over here, and the weather is genuinely beinning to cool down. Today, we're lighting a two part patient story covering…
By: Maria Palombini, IEEE-Standards Association For more than a decade there has been much propaganda on educating and encouraging patients to manage their healthcare. This was a direct shift in response…
ABC's Bachelor franchise isn't exactly known for not dramatizing the medical experience of contestants (if this article were in video format, we'd insert a montage here of all of the times…
We're almost halfway through September believe it or not! As autumn approaches, we're continuing the aggregate rare disease news. This week, we're highlighting three studies, and one article on a…
Hey...Is That Autumn on the Horizon? Well...kind of but sort of no, it is still pretty hot where we are; but it is only a matter of time before we…
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