We Are R.A.R.E.

We Are R.A.R.E., INC. is a 501(c)(3) company that is comprised of a group of parents who volunteer their time to reach out globally to advocate for rare brain disorders like Schizencephaly, Lissencephaly, and Microcephaly. We collectively set up events and community & professional education programs throughout the year to help with our efforts.

The event registration fees and donations we collect go to help with our organization’s operational cost, advertisement, education seminars for medical and education professionals, advocating for more awareness about rare brain disorders (including but not limiting to Schizencephaly, DiGeorge Syndrome, Microcephaly and Lissencephaly), and encouraging research by medical professionals through scholarships/grants.


Schizencephaly Awareness Events

No Schizencephaly Events Scheduled

Currently, all Schizencephaly Events have either passed or have not been scheduled. As more events are planned, we will list them for people to join us.


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.

Order a Copy!

Read excerpts from the book — Book Quotes

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Learn about our Organization

Learn about Our Organization

Contact us for more Information

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