How Do You Cope?Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage...reactions58repliesCoping
Seeking others with Houge-Janssens SyndromeHello. My son received a diagnosis of Houge-Janssens Syndrome type 3. It is caused by a mutation in the gene designated PPP2CA...reactionsrepliesDiagnosisNewly DiagnosedAwareness
Has Anyone Heard of Retinitis Pigmentosa? Rare Eye Disease DiscussionHi everyone, I recently came across Retinitis Pigmentosa (RP) , a rare genetic eye disease that affects the retina and causes slow...reactions3repliesAwareness
Andersen-Tawil Syndrome Diagnosis: Full CircleIn 2009, my baby brother collapsed while running in a track meet. He was 16, and I already worked as a pediatric...reactions3comments