Epidermolysis Bullosa, or EB, is a connective tissue disorder that approximately 200 babies are born with each year. The most serious symptom is the extreme fragility of skin. People with EB suffer…
Si usted es uno de los aproximadamente 1 de cada 25.000 a 50.000 personas en los EE.UU. que viven con inmunodeficiencia variable común (ICV), inyecciones regulares IV son un hecho…
Hey, you want to piss me off? Talk to me about the miraculous health benefits of vitamins and supplements! Vitamin D, Vitamin B12, Vitamin R2D2, Fish Oil, Hemp Oil, Pressed…
I applaud the American Association of Kidney Patients for their efforts to raise awareness about a condition called Fabry disease. A rather rare genetic disease, Fabry disease seems to affect…
Remember that questionable-looking salad you ate in a not-exactly-pristine restaurant? You've been trying to forget the server's blackened fingernails and sweaty brow, and as you double over from abdominal pain, you…
Let's all breathe a sigh of relief that we live in the age of modern medicine—and by that, I mean 2016. Less than 100 years ago, diseases like leprosy, now…
Olivia Trueb vive el sueño de todo adolescente. Al igual que en, ella tiene un equipo de jugadores de fútbol profesionales que se envuelve alrededor de su dedo, y para…
Every now and then, we all have bad days. But for a child living with a chronic illness like hemophilia—it’s just sooo unfair. I read an inspiring article written by a married…
Superman, where are you now? Look no further than Warren, Michigan. Not many people may know or have heard about dystonia. It is a neurological movement disorder that complicates mobility…
If you don't know what it's like to live with dystonia, then you need to watch this Youtube video by Shawn Fairchild. A brave man living with dystonia, Fairchild shows…
There's good news for people living with Hereditary Angioedema (HAE), the genetic disorder that results in sudden and severe swelling basically anywhere throughout the body. As those living with HAE know,…
If you've got Fabry Disease and you live in Canada, you've GOT to check this out. If you don't have Fabry Disease, allow me to clue you in: It's a…
Fabry disease results from deficient activity of alpha-galactosidase A (a-GAL A). Bless you. What? That's an enzyme which breaks down complex sugar-lipid molecules called glycolipids. When the body can't break…
On November 12, 2016, Present Troubles Racing will host their Hills and Hollers Half Marathon & 5K, which is intended to raise awareness about amyloidosis and funds to help support those affected…
Wanna know one GOOD thing about having a chronic illness like hemophilia? It can help you get a scholarship that might just change your life! When you have a chronic…
Kathy Antilla recuerda el momento en que escuchó a su hijo, Isaac, decir esas palabras que ella pensó que nunca oiría: "¡Mamá! ¡Mírame! Soy como un niño normal ahora." En…
Happy Labor Day Weekend Patient Worthians! We hope you can spend this weekend's extra time with friends and family while gearing up for fall! This week we have a post…
Gene therapy is the hot new thing in medicine these days--especially with hemophilia. The good new is, “Yay! There are hot new things in medicine exciting researchers!” The bad news…
Calling all kind and generous people living near Ilminster in the UK! On August 28, Zellweger UK and the Epilepsy Society raised money AND watched a lovely lady get her…
Optic neuromyelitis, also known as Devic's disease, is a rare disorder that affects the eyes and spinal cord. It occurs in approximately one in five out of 100,000 people, and…
21 de de julio de, 2015: El gigante farmacéutico, Amgen, fue galardonado con una impresionante aprobación de la Comisión Europea para Repatha, un fármaco reductor del colesterol avance según lo…
When I see a rubber boat and a headline with “boy” in it, I freeze. Can I bear to see another heartbreaking story on refugees in need of help? Thankfully, this was…
Learning more about your rare disease, like PAH (pulmonary arterial hypertension), can be confusing. Do you find a small support group? A big event? Do they even have those? Yes,…
Dan Giancola está a punto de tomar el viaje de esta vida. Literalmente. detalla el St. Catharine's Standard su misión de recaudar más de $ 100,000 para Abbi, una niña…
One of the most frustrating parts of having a rare disease is getting the dang diagnosis in the first place. We've all heard the garbage excuses before: "It's all in…
© 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.
