With a disease as rare as cystinosis—as in, only 2,000 people around the world are believed to have it rare—one of the biggest hurdles to raising funds for research has…
Finding treatment for a rare disease like CVID can feel like a dice roll. How can you find an effective treatment if doctors don't know exactly what's wrong with you? Dr. Harry…
IIIIIIIIITTSS.... MEEEEMEEEEE MAAAKING TIIIIIIIIIIIIIME! Remember that sneaky little quip I hid not so secretly into a 366 talking tip post a couple of weeks back? well the time has come…
Becoming a parent can be exciting and terrifying in nearly equal measures—along with the thrill, anticipation, and joy, there’s the fear of what could go wrong. Worrying about your child’s…
God blessed my husband and me with two girls, seven and nine. They are my reasons for living and my reason for fighting cervical dystonia every day. My oldest has…
May is Lyme Disease Awareness Month and like other awareness months, it's all about educating the medical community and the community at large. Lyme disease is one of, if not the…
We introduced Patient Worthy's newest and first Contributor living with Cushing's Disease in, On a Mission to be Fit and Fabulous, Meet Liz. If you are new to Liz's series about…
Inmunodeficiencia Común Variable o ICV, es una enfermedad rara que afecta entre 1 en 25.000 y 1 en 50.000 personas en el mundo. Búsqueda de información sobre la condición crónica…
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