We Are R.A.R.E., INC. is a 501(c)(3) that is comprised board members including parents, medical and legal advisers who volunteer their time to reach out globally to advocate for rare brain disorders such as Schizencephaly, Plagiocephaly, Microcephaly /Hydrocephalus/macrocephalic disorders, Lissencephaly and traumatic brain injury prior to birth, underlying conditions associated with rare cephalic disorders/cerebral palsy such as feeding dysfunction, seizure control, Alternative therapy and vision impairment information.
RARE works closely with leading medical physicians that support research and education for therapy and treatment. We collectively set up events and community support & professional education programs throughout the year to help with our efforts. We have a strong emphasis on journalism, blogs, media and social speaking events yearly.
We support and educate about cannabis and whole food diets for Gtube families as a healthier alternative for uncontrolled seizures, feeding dysfunction and the right to alternative treatments for traumatic brain injury.
We advocate and support inclusion for individuals with impairments and work closely in the local community as well as globally for patient rights and education pertaining to specific conditions.
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