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August 2021

Sunflower Syndrome Awareness Day

August 4

  Join We are RARE and families worldwide as we celebrate life and raise awareness for this unique and under researched condition. Sunflower syndrome is a rare, epileptic disorder characterized by highly stereotyped seizures. During these seizures, individuals with Sunflower syndrome turn toward a bright light while simultaneously waving one hand in front of their eyes. This unique behavior is coupled with abrupt lapses in consciousness according to Massachusetts general hospital neurology. Symptoms of Sunflower syndrome include an initial attraction…

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September 2021

Lissencephaly Awareness Day 2021

September 8

  Our second Day of awareness for #lissencephaly is fast approaching. Please contact us for fundraising ideas, help and assistance with our legal forms created for you to gain awareness through your state. Please download them here http://wearerare.org/lissencephaly/ Families in Florida we are organizing a educational seminar involving round table discussion with our local hospitals about providing more information and support to families by directing them to RARE and our board of professional doctors familiar with Lissencephaly and underlying conditions.…

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