We Are R.A.R.E., INC. is a 501(c)(3) company that is comprised of a group of non paid board members including parents, medical and legal advisers who volunteer their time to reach out globally to advocate for rare a brain disorder Schizencephaly and prevention.

We collectively set up events and community support & professional education programs throughout the year to help with our efforts.

We educate the medical world as well as families by providing resources and information and transition into this diagnosis. From conventions to training classes We Are RARE is dedicated to getting as much information to prevent, assist with therapy ideas and advocate for this unique disorder.


Founded in 2009 by a mother with a child affected by this disorder, We Are RARE Inc. has been able to set a day of awareness and reach media attention that is helping make this disorder known. Many children and adults facing this rare disorder deal with life threatening health issues including uncontrollable seizures, bone deformity, low vision, and surgeries throughout life. These bright smiles from our little warriors remind us that anything is possible with encouragement and support.

Awareness-Ribbon-Web (1)

In 2015 the U.S. Senate voted unanimously to declare May 19th as a National Schizencephaly Awareness Day.  Please use the following PDF document to contact your local representative to have them issue a proclamation declaring May 19 as "Schizencephaly Awareness Day" in your location:

2018 General Request Letter


Schizencephaly – Angels With Broken Wings

By Tricia Dennis and Stephanie Ziemann

Cover of Schizencephaly - Angels with Broken WingsAbout the author: Tricia Dennis and Stephanie Ziemann are two mothers that have joined forces to raise awareness for a rare brain malformation known as Schizencephaly, and to help other families. This book contains stories from parents and adults touched by a rare disorder called Schizencephaly. These are their journeys through life, and the bonds that have brought them together.

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Read excerpts from the book — Book Quotes