Cephalic

Sarah Jones Adult Panelist Schizencephaly Convention

By We are RAREMarch 14, 2021Comments Disabled

My Name is Sara Jones, I am 34 year old and I was born with 3 brain malformations Schizencephaly, Polymicrogyria and Pachgyria. My schizencephaly is one small cleft on the right side frontal lobe with two small slits on both sides the occipital...

National rare disease day Ruben

2014 Schizencephaly Awareness Events, Blog, Events, Research, Schizencephaly Awareness Day, Schizencephaly Community Page, Uncategorized

2014 Schizencephaly Awareness Events Blog Events Research Schizencephaly Awareness Day Schizencephaly Community Page Uncategorized

National rare disease day Ruben

By We are RAREFebruary 28, 2021Comments Disabled

National rare disease day. Feb 28th marks the 14th national rare disease day. Rubens Story. In 2019 we received a message from a lovely mum-to-be, Rachel, who reached out to us regarding her sons diagnosis of #Schizencephaly. At 34 weeks gestation during...

Posture is Critical to Learning and Attention

Blog

Posture is Critical to Learning and Attention

By We are RAREFebruary 10, 2021Comments Disabled

What risks are associated with W-Sitting? When children W-sit for longer periods of time, they are at risk for the following issues: According to Jenn Gonzales, OTR/L Chances are if you’re reading this, you have probably heard the term...

Blog

Disability in America January 2021

By We are RAREJanuary 16, 2021Comments Disabled

Northampton filmmaker probes environmental and public health factors … A little over 30 years ago, the Americans with Disabilities Act (ADA) was signed into law by President George H.W. Bush, marking the first major effort to protect people from...

Blog

New Program To Train Doctors On Developmental Disabilities

By We are RAREDecember 17, 2020Comments Disabled

A new effort is underway to better prepare future doctors and other health care professionals to treat people with intellectual and developmental disabilities. The U.S. Department of Health and Human Services’ Administration for Community...

Growing Up Alongside a Sibling With a Disability

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Growing Up Alongside a Sibling With a Disability

By We are RARESeptember 06, 2020Comments Disabled

How does growing up with a special needs sibling change you? When children help with the education of a brother or sister with special needs, the outcomes are often good for both. According to Dr. Milevsky, siblings of children with special...

Blog

COVID-19 kills children with intellectual disabilities at higher rates.

By We are RAREJune 16, 2020Comments Disabled

Several papers have shown how devastating the novel coronavirus has been for the elderly, minorities and people with underlying health conditions, but some researchers point out that studies on individuals with intellectual and developmental disabilities...

Blog Research Schizencephaly Community Page Uncategorized

Agenesis of the corpus callosum

By We are RAREMay 28, 2020Comments Disabled

Agenesis of the corpus callosum (ACC) is one of several disorders of the corpus callosum, the structure that connects the two hemispheres (left and right) of the brain. In ACC the corpus callosum is partially or completely absent. It is caused...

Homes for the Disabled See a Surge of Covid-19

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Homes for the Disabled See a Surge of Covid-19

By We are RAREApril 09, 2020Comments Disabled

“Forgive me if I get emotional,” Mr. McGuire said in an interview, choking up. “People discount people with disabilities and presume they understand them when they don’t know them. They think their lives are not worth the same as yours or mine,...

Message from RARE to medically fragile families covid-19 coronavirus

Blog, Research

Blog Research

Message from RARE to medically fragile families covid-19 coronavirus

By We are RAREMarch 20, 2020Comments Disabled

A message to our families and friends from We Are RARE Inc RARE familiesDue to the amount of emails we have received over the last few weeks we know you have concerns and questions. One of the biggest questions we get is should we self isolate? This is...

Sarah Jones Adult Panelist Schizencephaly Convention

National rare disease day Ruben

National rare disease day Ruben

Posture is Critical to Learning and Attention

Posture is Critical to Learning and Attention

Disability in America January 2021

New Program To Train Doctors On Developmental Disabilities

Growing Up Alongside a Sibling With a Disability

Growing Up Alongside a Sibling With a Disability

COVID-19 kills children with intellectual disabilities at higher rates.

Agenesis of the corpus callosum

Homes for the Disabled See a Surge of Covid-19

Homes for the Disabled See a Surge of Covid-19

Message from RARE to medically fragile families covid-19 coronavirus

Message from RARE to medically fragile families covid-19 coronavirus

Schizencephaly revisited (UK study 2018)

Schizencephaly revisited (UK study 2018)

A dads perspective on special needs Paul and Luke

A dads perspective on special needs Paul and Luke

Do the deaf have an inner voice?

Do the deaf have an inner voice?

Ruby’s Story Age 13, South Wales, UK

Ruby’s Story Age 13, South Wales, UK