Tag: DiGeorge Syndrome

A total of 4 posts are filed under DiGeorge Syndrome
RareCAST: Experimental Rare Disease Therapy Wins New FDA Reg Med Designation
  Last month the U.S. Food and Drug Administration granted Enzyvant both Breakthrough Therapy Designation and the newly established… Continue Reading
Not Quite Empty Nest: Grief and the Special Needs Parent
By Kate Welch When my son Caleb was born in 1996, he was taken from me by ambulance before he was  12 hours old to have open-heart surgery… Continue Reading
Diagnosis 22q11.2 Didn’t Stop Alabama Woman From Nursing School or Rare Advocacy
by Rebecca Osberg I am from a small country town in Alabama. With wonderful, caring parents and family annd awesome physicians. I have been… Continue Reading
From One Parent to Another: You’re Doing The Best You Can
Story by Aine Keogh Growing up I knew I was different from other children. I had little speech until I was six years old. After a surgery on… Continue Reading
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