Avascular Necrosis a.k.a. OsteonecrosisWhat is avascular necrosis?Avascular necrosis, which is also known as osteonecrosis, is a rare disease characterized by reduced blood flow to bones in the joints, leading to…
Imagine your father has just suffered a heart attack and must undergo open-heart surgery in order to repair the damage... Picture your baby niece or nephew was born with a…
Welcome to Friday Patient Worthians! This week we have stories on cystinosis and super moms with sickle cell! Additionally, we have a patient story on dystonia and an upcoming event. Lastly, an…
As the father of a newly-minted teenager, I’ve come to understand all too well the fleeting nature of childhood “firsts”: First words, first steps, first artwork, and other moments in…
Janelle is a 21 year old student at the University of Nebraska at Kearney. She has a great sense of humor, has shown horses for years and someday she wants…
Gene therapy has been talked about for quite some time, but recent news has turned a hope into a reality for babies born with adenosine deaminase (ADA)-deficient SCID, severe combined…
Patient Worthy attended the EveryLife Foundation’s annual forum this past Tuesday in Washington, DC. It was a full day workshop about why incorporating the patient perspective into the various phases of developing drugs…
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