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 fetal stroke prevention.
We collectively set up events and community support & professional education programs throughout the year to help with our efforts. The event registration fees and donations we collect help with our programs like Schizencephaly super hero of the month club, special equipment for families needing assistance, birthday and get well packages for children battling medical issues associated with this disorder, organization’s operational cost, advertisement, education seminars for medical and education professionals, literature and advocating for more awareness about Schizencephaly and medical research by collected data. Schizencephaly awareness and prevention remains one of the most important aspects for this foundation.
Founded in 2008 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.
Schizencephaly Awareness EventsThe 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 as many tickets as possible before March 7th. Share with your friends, family and co-workers! Click here to download a flyer to pass aroundRead more...
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.Read more...
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
About 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.
Read excerpts from the book — Book Quotes