Quick question: What does multiple myeloma have to do with myasthenia gravis (MG)? On the surface, not much—one is a rare cancer of the blood, the other is an autoimmune…
As featured in this Strawfie Challenge press release last week, two Ohio twins Aleeya and Alani are seeking to spread awareness of cystic fibrosis and the harsh realities of living…
En un momento dado, la medalla de oro ganando Singapur nadador Clemente Lim estaba postrada en cama durante dos días porque tiene espondilitis anquilosante, "Me daba miedo nunca nadar de…
It's not easy to be a Rare Dad and sometimes it helps to be around other people who are in similar shoes. SALT is a multi-day program created for dads of…
It's no easy battle, but for Tayjus Surampudi and many others, muscular dystrophy is a battle worth getting up and fighting against. Tayjus is a student at Harvard. And if…
"Health is not valued until sickness comes." - Thomas Fuller June 13-19 is Men's Health Week, and the last day is Father's Day. A great way to stay healthy is…
Amyloidosis Trailer: A Tribute to The Amyloidosis Foundation from katelyn Payne on Vimeo. This trailer for the Amyloidosis Foundation's documentary was created by a student whose mother has amyloidosis. It…
I wrote this poem about my father. He is not a rare dad, but I feel like he can be an inspiration for those going through hard times. He hurt…
Burning Nights is a chronic pain charity in the UK that was set up by Victoria Abbott-Fleming, a CRPS patient and author. The organisation gained official charity status in spring 2016…
Still not feeling well? You are not alone! The new, and validated survey instrument on quality of life for patients being treated for acromegaly, developed by Dr. Maria Fleseriu and…
Come one, come all! Well, if you have mucopolysaccharide (MPS), that is. The 30th Annual Family Conference is taking place this August in Colombus, Ohio and the National MPS Society…
es la inyeccion subcutánea parte de tu plan de tratamiento para la ICV? ¿Alguna vez ha quedado sin crema anestésica antes de una inyección? ¿Es usted un fan de Jim…
The world was his audience, and everyone was watching. It was time to say "I have Idiopathic Pulmonary Fibrosis" If you are like most ordinary people, you are likely not familiar…
Men's Health Week is June 13th to 19th. It is to remind men to get a check up to help catch preventable illnesses, and encourage early detection and treatment of disease…
5 Tips to Maintain a Healthy, Active Lifestyle While Living With Von Willebrand Disease Von Willebrand disease (vWD) is a rare bleeding disorder, found in about 1 percent of the…
Myasthenia Gravis (MG) is also referred to as the snowflake disease because every snowflake is different, much like how MG affects each person differently. Click here and to learn more, courtesy…
Heather Smith suffered one of the greatest losses known to humanity: the death of her firstborn son, Brandon. He was seemingly healthy until he caught a cold at six months old,…
Dysautonomia is not exactly a rare disease because it affects so many people. So, it's surprising that so little is known about this central nervous system disease, or what causes it.…
Every day, millions of people wake up hoping that today will be a good day—that today, the pain will be at a bearable level. Myasthenia gravis (MG) patients know the high…
Después de seis años de diagnósticos erróneos y trituración de la decepción, un médico finalmente cuenta de que Katie tenía una rara condición genética en torno a una proteína llamada…
The diabetes drug pioglitazone, has an unexpected side effect that brings hope to patients with chronic granulomatous disease (CGD) and other primary immunodeficiency diseases. This drug boosts the production of ROS in…
On average, women live five years longer than men. Of course we want to spend as many days possible with the men in our lives. June 13th - June 19th…
The last thing any parent wants to hear is that their infant or child has been diagnosed with congenital myasthenia gravis, a disease that causes various degrees of weakness in the…
Fathers often seem to have the great knack for good story telling. Growing up I always wanted a story from my father. This Father's Day, the world should hear the life…
What do you never leave home without? Is it a purse? Your wallet? Keys? Yeah, I have all of those things too. But September through May, and dozens of other…
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.
