‘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…
As my children are getting older they seem to create elaborate stories of why they didn’t clean up their room or complete any other task on their to-do list. I’ve…
TGIF! Something we believe is that the stories of rare disease patients are vitally important. This week, we're highlighting two articles written by patients, as well as a story about…
Happy Thursday! This week, we're highlighting an article about the neglect of policies meant to protect people with IBD. Next, we have stories on two recent studies affecting MS and…
Happy Thursday! This week, we're highlighting an story about a woman with Bechet disease who advocates for herself and others. Next, we have an article discussing the difficulty of caring…
Happy Thursday! This week, we're highlighting a PW contributor's story exploring blepharospasm and mental health and an article on two sisters with a rare connection. Following that, we have a…
Talking about mental illness is never easy but I wanted to share my experience of it with you. In my case, it came as part of my struggle with Benign…
TGIF! Unless you're on vacation in which case, every day is *basically* Friday. This week, we're bringing four articles to read as you escape the summer heat. We have a…
The Immunization Action Coalition (IAC) Express Newsletter reports that 981 cases of measles have been reported so far this year, with 41 new cases added just last week. Rare disease kids…
As recently reported in CheckOrphan, a new drug for sickle cell disease has quickly ascended through the FDA approval processes in an accelerated review. A New Sickle Cell Drug Shrouded…
Learning that you or a loved one has a rare genetic disease can be scary. Doctors often are not very well versed in these types of disorders and may require…
Phenylketonuria (PKU) is a rare disease which causes phenylalanine (an amino acid) to build up in the body, leading to serious health complications. Since amino acids are obtained through the…
Happy 7-11 Day! We hope everyone's on their way to get their free slurpie today! For this week's editor's choice, we're highlighting four articles. First, we discuss kratom, the controversial…
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