Erin no se puede recuperar una vez en su vida cuando ella no estaba enfermo. Desde la edad de cuatro años, ella ha tenido una sucesión interminable de infecciones, sinusitis,…
People with treatment-resistant epilepsy (TRE)—and especially parents of children with the severe form of epilepsy called Lennox-Gastaut syndrome—can easily become discouraged as they speed through a growing list of anti-seizure…
Paroxysmal nocturnal hemoglobinuria, or PNH, is a hematopoietic stem cell disorder. Hematopoietic stem cells are developed in the bone marrow, where they grow and eventually develop into red blood cells, white…
The Ice Bucket Challenge was a huge success for raising awareness and funding for ALS research. But this year, there is a new fundraising effort for the debilitating, neurodegenerative disease called…
Don't lose your optimism or courage and don't ever give up. Illness isn't easy, but don't let it steal from you.
Press release - 10th July 2016 PW Partner: Breathe With Me, Strawfie Challenge When Danielle Cartwright filmed her daughter Talia May taking her medication and proudly posted the video online,…
Usted sabe que esos anuncios, "¿Qué haría usted para una barra de Klondike?" Piense acerca de eso, pero en vez de conseguir el helado se llega a jugar béisbol. ¿Qué…
You may not recognize what ALS (Amyotrophic lateral sclerosis) is, you may recognize it as Lou Gherig's Disease, or that disease that Stephen Hawking has. It is a terrible disease that…
You may not know this but Shakespeare's signature is super rare, there are only six known authentic signatures of his in the world. You know what else is rare? People…
A lot of us fight Lyme the only ways that are available to us, be it antibiotics, homepathy or other alternative routes. However, when a kid has chronic Lyme, he…
With chronic illness, rare disease, and life in general, there are always going to be rough patches where you start to lose hope. It's impossible to keep a positive, upbeat…
Wow! This is a pretty cool invention to help make life a little easier for people with disabilities. A start-up company called Neurable is working on a technology called BCI,…
Mamá cualquiera entrega el don extraordinario de la Vida Brookwater, Australia. Corinne Heapy, es una dedicada madre de dos hijos, sabe de primera mano, lo que es dar el…
If 70 million people are suffering from dysautonomia, why is the medical community so clueless when it comes to diagnosing this disorder? Dysautonomia occurs when the autonomic immune nervous system--…
Mycosis Fungoides is a rare type of lymphoma cancer. Most often, it causes skin lesions called patches that are flat, scaly, pink or red areas on the skin that can be…
Parkinson’s disease damages the nervous system, and like other motor system disorders, it affects nearly every facet of life. One of the rarely-discussed symptoms of Parkinson's that can have a…
Living with an illness is going to impact you, there's no way around it, being sick Isn't something to be taken lightly How does it influence you? Despite the toll…
Dancing is all the rage these days, with shows like Dancing With the Stars bringing in top ratings. People are enrolling more in dance classes, and going to the ballrooms in…
Channel your inner Mickey and put those big ears to the ground! What’s that you hear? Why, it’s the sound of a whole lotta cutting-edge, exciting resources from the hemophilia community heading to…
En el mundo de hoy, hay 30 millones de estadounidenses afectados por 7.000 formas diferentes de enfermedades raras, todos con necesidad de tratamiento. Pero debido a que las enfermedades son…
Welcome to this week's Editor's Choice Patient Worthians! This week, we want to spread some info on what it feels like to actually live with rare disease. Not just about…
Glanzmann thrombasthenia is a bleeding disorder where the proteins that make up receptors on blood platelets are either missing or not working properly. This causes: Easy bruising Nose bleeds Bleeding…
Calling all residents of the Mitten State (also known as Michigan) who live with, or care about, someone suffering from dysautonomia or gastroparesis! Sunday, July 10th is the time to party…
Have you been this for somebody? Has someone done this for you? Even simple things can improve someone's day and brighten their life, so why not try? KNowing someone's breathing…
Most people don't think about illnesses or diseases unless they're directly affected. After all, who wants to worry about things that will likely never be a problem? Rare diseases obviously do not get much attention…
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