Gastric electrical stimulation (GES) has long been suggested as a treatment for symptoms of gastroparesis, but the use of the technique has been deemed controversial. A recent study published…
The most common inherited bleeding disorder, von Willebrand disease, appears more likely to cause problems for juvenile males living with the disease than juvenile females, according to a study…
Happy Friday, readers! We hope everyone's staying warm! This week we're highlighting a new patient story from a rare disease parent in the Czech Republic. Next, we have ann article…
By Jodee Redmond from In the Cloud Copy The results of a recent study published in Pompe Disease News suggest that a molecular “tag” used to improve the distribution of…
By Rachel Whetstone from In the Cloud Copy Although rare diseases are uncommon by definition, a new study shows that the total number of people affected by rare diseases is…
Happy Thursday, Friends! It's getting cold outside! This week we're highlighting a new patient story from the Czech Republic on a younger patient diagnosed with a disease generally associated with…
It started with fatigue. Then came problems with moving, hand tremors and problems walking. Multiple sclerosis was ruled out by magnetic resonance imaging (MRI). But the trouble didn’t go away.…
Note: The author does hold immense compassion for children and teens and their families living with rare disease. Compassion is empathetic in sorrow, rather than wishing there is no sorrow,…
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…
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