What if you had a super-rare disease and thought you were the only one on the planet who had it? What if your medical team suspected you might be right about…
Muchas personas con angioedema hereditario (AEH) le dirá que realmente no están seguros de qué causa sus ataques, pero pueden identificar algunos factores desencadenantes comunes, tales como el estrés, la…
Viviendo el sueño como un futuro de béisbol Destacado, Franklin Gutiérrez, alias "Guti" estaba en la cima del mundo. En 2000 los Indios de Cleveland firmaron al agente libre aficionado…
When UK cyclist Andrew Beale decided he was going to throw his support behind The Dystonia Society, he didn't waste time getting sponsors. With nearly $400 pledged, he was disappointed to learn that…
Researchers around the world are constantly looking for new leads in combating chronic illnesses, and they’re making progress all the time. But it’s not often they make a discovery like…
Just how far does the apple fall from the tree? One in 12 people in the Western hemisphere suffer from autoimmune diseases such as juvenile idiopathic arthritis and Crohn's disease. A…
Manos amigas pueden hacer cosas realmente sorprendentes. Eurodis, los campeones del Día de las Enfermedades Raras, demuestran esa idea en su vídeo sobre el Día de las Enfermedades Raras del…
La natación es no sólo un gran ejercicio en general, pero también es un ejercicio fantástico si usted está viviendo con espondilitis anquilosante. No es tan discordante para la columna…
Joel is like a lot of people. For two years, he suffered from back pain that was resistant to treatment. He had physical therapy, medications, and was placed in traction--to…
Wanting to learn more is a common desire for many people with a rare disease, and researching online is probably the most common way people do that! Naturally, we're always looking for…
One of the truest ways to help those with rare diseases is to make people aware of them. The more people who are aware, then more people can donate. The more…
A recent study at the University of Edinburgh in Scotland is showing results that link genetics to certain forms of mental illness. Briefly mentioned was the fact that, although the…
Global Genes tells us that Bonnie Wheeler spent the first 40 years of her life enduring the symptoms of undiagnosed Ehlers-Danlos syndrome, which is a grouping of connective tissue disorders.…
5 Preguntas que estás cansado de oir cuando tienes ICV: "Así que tienes problema digestivos Y respiratorios? Sí. Ambas cosas. Confía en mí me quedaría con uno si pudiera.…
The HAE community cheered in July of 2015 when another new therapy was approved by the FDA to treat acute HAE attacks. Now, the pharma company has another reason to cheer. The…
Hannah Kiresuk, 20, is a noted high school skier who has spent much of her free time going downhill. At 16, she was diagnosed with myasthenia gravis, a rare disorder…
Are prime-time TV medical-dramas truly distorting patient expectations? We don't think so. Do you? Medical dramas aren't the only ones in today's television circuit that are incorporating rare diseases into plot lines…
Above photo by Sandro Georgi Photography Rob has led an interesting life to say the least. He was in the navy for 20 years and has lived in Florida, Alaska, Diego…
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…
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…
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…
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…
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…
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