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, Microcephaly and Lissencephaly), and encouraging research by medical professionals through scholarships/grants.

Schizencephaly Awareness Events

Denver Nuggets and We Are R.A.R.E.

The Denver Nuggets have partnered with We Are R.A.R.E. for a fundraiser. Start spreading the word and join us at the Pepsi Center. The Denver Nuggets will be battling the Houston Rockets. This is NOT a game to MISS! Tickets are on sale through the Denver Nuggets sponsored fundraising website http://www.nuggetstix.com/wearerare. Any tickets purchased at the box office or through any other means does not count towards our fundraising efforts. Help us reach our goal to sell 1,000 tickets before March 7th. Share with your friends, family and co-workers! Click here to download a flyer to pass around

Casino Night at the Monumental Hotel in Orlando Florida

Join us on October 10th for We Are R.A.R.E. casino night hosted at The Monumental Hotel in Orlando, Florida. Early registration starts at 5:30 pm and the tournament begins at 7:00 p.m to 10 p.m. You will meet Noah and celebrate a night of fun and support for Schizencephaly.

October's RARE Super Hero Notification

Every month we will have a drawing to select one person to be our RARE Super Hero. The winner of the drawing will get a special mask made for them from Crystal’s Creations.

Go to our RARE Super Hero’s page to submit your entry!


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

Make Donation to Support our Cause

Learn about Our Organization

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