Schizencephaly families

2021 Schizencephaly Virtual Convention

By We Are R.A.R.E!May 19, 2021Comments Disabled

Join families, Speaker, guests, and friends from across the globe for our celebration of Schizencephaly on May 19th This event is free to everyone with a limited capacity of 300 guests per panel. All sessions will begin at 9 am to 1 pm then commence again...

Sarah Jones Adult Panelist Schizencephaly Convention

By We are RAREMarch 14, 2021No Comments

My Name is Sara Jones, I am 34 year old and I was born with 3 brain malformations Schizencephaly, Polymicrogyria and Pachgyria. My schizencephaly is one small cleft on the right side frontal lobe with two small slits on both sides the occipital...

Virtual convention Dr Joseph Rosado, MD

2014 Schizencephaly Awareness Events, Blog, Events, Research, Schizencephaly Awareness Day, Schizencephaly Community Page, Uncategorized

2014 Schizencephaly Awareness Events Blog Events Research Schizencephaly Awareness Day Schizencephaly Community Page Uncategorized

Virtual convention Dr Joseph Rosado, MD

By We are RAREMarch 01, 2021Comments Disabled

Dr Joseph Rosado, MD is one of the world’s most respected medical authorities on cannabis as plant-based medicine. With over four decades of experience as a healthcare professional, he’s built a career anchored in...

National rare disease day Ruben

2014 Schizencephaly Awareness Events, Blog, Events, Research, Schizencephaly Awareness Day, Schizencephaly Community Page, Uncategorized

2014 Schizencephaly Awareness Events Blog Events Research Schizencephaly Awareness Day Schizencephaly Community Page Uncategorized

National rare disease day Ruben

By We are RAREFebruary 28, 2021Comments Disabled

National rare disease day. Feb 28th marks the 14th national rare disease day. Rubens Story. In 2019 we received a message from a lovely mum-to-be, Rachel, who reached out to us regarding her sons diagnosis of #Schizencephaly. At 34 weeks gestation during...

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Schizencephaly -neuronal migration disorder

By We are RAREJanuary 16, 2021Comments Disabled

Schizencephaly Poornachand Veerapaneni; Karthika Durga Veerapaneni; Sisira Yadala. Author Information Last Update: August 10, 2020. Go to: Introduction Schizencephaly is a rare congenital neuronal migration disorder characterized by the presence of...

Mariah’s a Rare Gem

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Mariah’s a Rare Gem

By We are RAREFebruary 11, 2020Comments Disabled

Mariah wasn’t going to let her condition get in the way of anything she wanted to do. As a result her company was created through determination and encouragement of those around her. Her story should remind us all that our challenges do not...