A recent event held in Houston, Texas, raised over $27,000 to help fund research and raise awareness about bone marrow cancer. The Frontier Fiesta 5K Run, now in its third…
Mika Covington was diagnosed with cystinosis when she was 10 months old, and has struggled with its effects throughout her life. Cystinosis is usually diagnosed before the patient's second birthday. It's…
Sjögren's Disease and Mastocytosis are two very different illnesses, but have one thing in common: they are VERY rare. The infographic below provides information about what the disease is, prevalence…
As a writer, every once in a while, I'll have an "A-HA!" moment: Usually when I realize my perception about something is off kilter, and the truth suddenly becomes apparent.…
RESEARCHERS BELIEVE SARCOIDOSIS IS ASSOCIATED WITH AN ABNORMAL IMMUNE SYSTEM RESPONSE, BUT WHAT TRIGGERS THIS RESPONSE IS NOT KNOWN. NOR DO DOCTORS KNOW WHETHER HEREDITY, ENVIRONMENT, OR LIFESTYLE AFFECTS THE…
Congratulations to Accelmed, the equity investors, who backed SoniVie, a startup company based in Israel that's made a breakthrough treatment device for pulmonary arterial hypertension (PAH). Of course, we owe a…
never lose hope, for hope is an infinite feeling and disappointment is never everlasting.
Recently, a website called The Mighty invited its readers to write a letter to the rare disease or mental disorder that affected them or a member of their family. One mother…
Oh Canadá, la gente piensa que eres todo "por favor y gracias", y el jarabe de arce, pero conozco la verdad: Eres un luchador y esa lucha es más evidente…
10 cosas que he aprendido viviendo con el síndrome de Ehlers-Danlos 1. No es tan malo ser espontáneo Cuando era más joven yo tenía planes y listas para toda mi…
PatientWorthy está asociando con CysticLife.org para poner de relieve algunos de los miembros en su increíble comunidad! CysticLife.org surgió de un blog iniciado por paciente con FQ, Ronnie Sharpe, para…
In a segment on Oprah, dystonia patient Rogers Hartmann agreed to wear a camera on her head to show how she experiences the world. Bent at nearly a 90% angle, she frequently…
Alguna vez has tenido uno de esos días en los que simplemente no se sentía muy entusiasmado acerca de su vida? Tú sabes de qué estoy hablando. Los blues de…
The following memes focus on keeping your happiness and badassery levels high! No matter what your struggles, whether it be dealing with a rare disease or fighting to create awareness…
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