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.
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 from our research team that is relayed to medical facilities. Schizencephaly awareness 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 Events
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