The 4TH volume of the Atlas
The 4TH volume of the Atlas of rare diseases of Iran has been published. The…
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Children suffering from EB
Enter by a smile. This is the first thing you see on the door…
Helping doesn’t depend on the number of help wanted
Henoch-Schonlein Purpura (HSP) is kind of rare disease which is less identified and unfortunately,…
The story of a boy who just opens his eyes by his mother’s voice
He lived normally and he didn’t have any problems till the age of 5.…
Lifetime Achievement Award Honoree
Dr. Robert M. Campbell, Jr. is Director of the Center for Thoracic Insufficiency Syndrome…
You Know You’re An EB Mom
You Know You’re An EB Mom When… & What I Need You To Know…
Rare Disease Day 2018 Ambassador
Sean Hepburn Ferrer, the eldest son of the late actress and humanitarian, Audrey Hepburn,…
Oliver’s Story
Our son Oliver was struck down with Acute Necrotising Encephalopathy of Childhood (ANEC) this is a rare condition.…
The Artist Who Lived Life with Every Stroke
“I knew something was not right with my child. I could sense it from…