Causes: Human Service Organizations, Human Services

Mission: We Are RARE 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, 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 encouraging research by medical professionals through scholarships/grants. All proceeds go back to families and educational training. We are an unpaid board as registered with the federal government

Results: over 57 iPads raised for children. 2014 Senate approved May 19th as national Schizencephaly awareness day thanks to Senator John Hoeven18 foot banner sailing on the famous Liana's Ransom Publications. Schizencephaly: angels with broken wings Nancy grace award 20082016 medical conference/2017 rare conventionListed on many national health organization websites

Target demographics: Families touched by rare neurological disorders like Schizencephaly

Direct beneficiaries per year: 388 families

Geographic areas served: Florida

Programs: Fundraisers, Medical training and education, assistance for communication devices and supportThis year we will be seeking community and US grants to assist in finding researchers