The 4TH volume of the Atlas of rare diseases of Iran has been published. The Atlas, which was accomplished with the research of the group of the scientific-research council and the Medical Commission of the foundation of rare diseases of Iran,…
Enter by a smile. This is the first thing you see on the door when you want to enter Eb community room. You have to put off your shoes when you want to get in, to reduce the risk of…
Henoch-Schonlein Purpura (HSP) is kind of rare disease which is less identified and unfortunately, it is not supported by any organizations as it is an orphan disease. Purpura can affect anyone. But it’s most common in children especially boys between4 to…
He lived normally and he didn’t have any problems till the age of 5. One day when he was playing in the yard in his grandmother’s house he fainted suddenly. His mother cuddled him and kept calling his name “…
Dr. Robert M. Campbell, Jr. is Director of the Center for Thoracic Insufficiency Syndrome (CTIS) and an Attending Physician in the Division of Orthopaedic Surgery at Children’s Hospital of Philadelphia (CHOP). He is best known as the inventor of the…
You Know You’re An EB Mom When… & What I Need You To Know I know there are some out there who think they know what the life of an EB mom is like. Maybe you’re an EB (Epidermolysis Bullosa)…
Sean Hepburn Ferrer, the eldest son of the late actress and humanitarian, Audrey Hepburn, is Rare Disease Day 2018 Ambassador. Sean Hepburn Ferrer was the previous Rare Disease Day Ambassador for 2014, 2015, 2016 and 2017. We are honoured that…
Our son Oliver was struck down with Acute Necrotising Encephalopathy of Childhood (ANEC) this is a rare condition. On the 20th February 2016, Oliver was only three and a half years old. He was rushed into Accident and Emergency Department in Oxford because he…
“I knew something was not right with my child. I could sense it from when he was very small,” explained Mauricio Saravia’s mother Marisa Damele. “Then, as he grew older, he would hit his head on the wall and with his…
A 6-year-old girl named Kamiyah who every day experiences several spell where her entire body freezes up – her lungs, her muscles, everything. With Kamiyah, we’re not necessarily looking for a diagnosis, as NIH ( National Inistitute of Health) has…
