One of the first things many people do after being diagnosed with a rare disease is search online to find out more about it. I know that is exactly what…
FAiRE is a clinical study program for children and young adults with Dravet syndrome. On their website, they provide information and an opportunity to get involved and be a study…
Let's be honest - watching the news today can be a little depressing. Whether it's political scandals, human rights crises, and the usual doom-and-gloom of war and dangerous world dictators,…
Sickle cell anemia is caused by abnormal hemoglobin, which is the protein that allows oxygen to stick to red blood cells (RBC) and travel throughout the body. This causes bone…
Clinical immunology is a biomedical branch of science that studies the immune systems of all living things, including people. It is through such studies that great advances in medicine have…
A short list of abilities that we take for granted: going shopping playing basketball sitting up in a chair walking to the restroom when the urge strikes reaching out and grabbing…
Happy Friday Patient Worthians! April is Sjogren's Awareness Month! There was also a whole day dedicated to Bohring-Opitz Syndrome. The MDS Foundation has another upcoming event as well. Lastly, last month…
At first the running was exercise, a way to lose a few pounds. Running soon became the way Beth Markesino forgot her diagnosis of trigeminal neuralgia (TN) – the way…
Sometimes… just sometimes, dads get a bad rap. Think about all the mommy blogs out there to empower, to share, and even at times, to vent about the life and…
When it comes to talking about families, there is a one-of-a-kind love between siblings. A form of admiration that only siblings can understand. At the end of the day, the…
My dad is devoted to the people he loves. I can’t tell you how many times I’ve heard, “You should always honor your family.” I’m probably not as generous a…
In a scene reminiscent of the wildly popular TV series House, real life medical researchers solved a PI mystery that plagued one family for over four decades. Members of this…
What is the perfect way to spend a Saturday? Well, if you are a fishing enthusiast and enjoy raising money for a cause I have the perfect event for you.…
Here, in the United States, just thinking about April 15th is enough to give you the heebie-jeebies. Of course, I'm talking about the deadline for filing our federal income taxes.…
Some scientific breakthroughs, while exciting, require a calm, measured response. Most, make that all, demand repetition and duplication, as per the scientific method. But there are a select few that,…
Fun fact about Bradley Mann: he used to feed boiled eggs to the pet raccoon at his nursery school. Trust me, this is only the start to an interesting life…
Who could be against the health and well-being of newborn babies? Surely, not any decent human being. Babies come into this world in an incredibly vulnerable state. They have essentially…
Approximately one million people worldwide have been diagnosed with tuberous sclerosis complex (TSC), a condition where non-cancerous tumors and other lesions grow most commonly in the kidneys, heart, lungs, skin and…
Think of it as a mashup between a standard swimming cap and the Cerebro device Professor Xavier uses in the X-Men series. Whatever you want to call it, you should…
What comes to mind when you hear "palliative care?" Most people might think it only helps someone with end-of-life care. But did you know that palliative care can actually lift spirits…
Jamie has been living with Tourette syndrome, so bad that she was not able to perform many of her daily activities. She would often avoid going to places outside of her…
The Sjogren's Syndrome Foundation wants to spread awareness on this condition. The Foundation, alongside its members and volunteers, wants to use its platform to educate people about the Sjogren's syndrome.…
The On Tap for TS event is Saturday April 1, 2017 from 4 - 8 pm to benefit tuberous sclerosis complex (TSC) and autism research. It will be at BadWolf…
A clinical trial is up for those suffering from Duchenne Muscular Dystrophy. An oral tablet called Idebenone will be compared to a placebo, to see if it is safe and…
Upcoming event made possible by the MDS Foundation! Whether you are a newly diagnosed patient, a long-term survivor, or a caregiver, this event will give you the opportunity to learn…
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
