You may have seen the Jeffery Modell Foundation's name around town, literally, from their educational posters. I was thrilled to come across one in the Chicago O'Hare International Airport. The…
For 21-year-old Tanner Pyeatt, the future is uncertain. Diagnosed with Duchenne muscular dystrophy at the age of four, he gradually lost the use of his legs and has been wheelchair-bound since age nine.…
As most readers of this site are probably aware, a “rare disease” is classified in the United States as one that affects fewer than 200,000 people. It’s estimated there are…
Sometimes people just don't understand how much of a big deal Lyme can be. Can you imagine if you had that disease and someone told you "Oh, that shouldn't be a big…
Parker Wade is more than a cystinosis patient; he’s a Buckaroo, too! “Mothers of Buckaroos,” a Texas organization, banded together to raise funds for Wade, who received an expensive kidney…
In the video above, PW Contributor Rob tells us about working to get an acromegay diagnosis. As he describes: "Acromegaly, unfortunately, a lot of times doesn’t get diagnosed until the…
May 16th is HAE Day. Participate in raising awareness by joining the campaign to cover the world with smiles.
La edad de las máquinas, estamos en ella! La tecnología se ha hecho cargo. Hace algunas décadas, cuando alguien hablaba de la tecnología, pensado en Orwell novela 1984, las películas…
When you think of 14-year-old boys, what do you think of? Rough-housing, raging hormones, an abundance of energy, maybe a little teenage rebellion? Often that’s the case, but Cooper Wilson,…
If you have a rare disease with no cure, it’s important to live your future today. Bradon Coy, 10, took that advice by travelling all the way from the United…
If you or someone you know and love has Lyme, then you know how important it is for the medical community to have as much information as possible about it. Senator…
Sarcoidosis is caused by tiny granulomas forming most commonly in the lungs or lymph nodes and eyes. Doctors believe it is the result of the immune system trying to fight…
What makes YOU tick? Is it Lyme disease? It was for Jenny Buttaccio, who suffered for years with "an ever-growing list of strange symptoms" without answers. Until finally, a doctor…
A lot of people's journey to their Lyme diagnoses starts because they thought they had the flu. The symptoms for Lyme can be wildly contrasting, and two separate cases can look…
An on the Bel Marra Health website (you can check it out here), talks about the difference between ankylosing spondylitis (AS) and “just back pain.” (It also says that there may…
En un estudio reciente publicado por Prime Therapeutics, la compañía informó que el costo anual del tratamiento de un paciente con AEH es más de $ 300.000. Queríamos ilustrar las…
Like all genetic disorders, there aren’t many silver linings to having cystic fibrosis. The best we can say is that life expectancy for people with CF has improved thanks to…
Happy Friday Patient Worthians! We hope your Mother's Day was as awesome as ours. This week we have some awesome posts from our rare moms (#RareMom), those who fight their own…
Do you have hives (or a rash) that will not go away? And maybe inflammation of your joints, recurrent fevers, and perhaps enlarged lymph nodes? If you answered yes, you may…
For years, patient advocates and insurance companies have been outraged and fighting about a Lyme disease bill in Massachusetts that is controversial. The proposed bill, if passed, would provide long-term…
1. It’s Genetic A hereditary condition, familial hypercholesterolemia (FH) affects roughly 1 in 500 people around the world, according to the National Institutes of Health. Because the disorder is present…
Amber Blair, a brave 13-year-old girl from Chowchilla, California, was born with common variable immune deficiency (CVID), but she wasn’t properly diagnosed until years later, according to Chowchilla News. She…
I had a sneaking suspicion that I was sick before any doctors diagnosed me with chronic, late-stage Lyme disease. The following playlist pretty much spells out my journey from feeling…
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