About We Are R.A.R.E.

Some of what we do

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Conventions, Build relationships with hospitals and medical teams around the globe. Educate on cannabis treatment and alternative therapy

Professionally document our speakers on topics about scoliosis and how it relates to Schizencephaly. Neurologist that can describe what Schizencephaly is and allow medical students to do research exams on the subject

Emails are answered by a team of board members with knowledge in this disorder and all spectrums of it, from education to genetic testing to therapy and resources.

We collectively gather data through polls and use that to gain information to present possible partners in research.

We Are RARE works through the community on several grounds to advocate for special needs rights and law as well as updated information to help you learn about Schizencephaly.

 

 

https://wearerare.tumblr.com/post/140082007245/volunteer-hero-spotlight-tricia-dennis

https://greatnonprofits.org/organizations/view/we-are-r-a-r-e-inc/page:3

 

Publix Protest’s Powerfully Positive People

 

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 Our RARE Colors

Purple represents the many facing uncontrollable and controllable seizures associated with Schizencephaly. It is the color that best represents Epilepsy

Green Represents the muscle issues associated with Schizencephaly. Cerebral Palsy is an underlying condition of Schizencephaly and the stroke that occurs in the first trimester of pregnancy.

 

Mission Statement

We are RARE stands for Rare, Awareness, Research and Education.
Finding out your child or loved one will be facing hardships in life is one of the most difficult moments special needs families face. It can be a confusing and scary time, and many feel alone and isolated.

Established in 2011, We Are R.A.R.E., INC. (formally Noahscart, INC) is a 501(c)(3) initiative made up of experts in this disorder, including parents with family members facing these challenges and aimed at providing research, awareness, and education for fetal stroke causing Schizencephaly.
We have several programs for families including iPad funding and community outreach programs not limited to medical facility training and teaching prevention to hospitals and prenatal care facilities. We facilitate events and conventions hosted by healthcare professionals associated with Schizencephaly and work alongside hospitals to better enlighten them on the disorder. We offer data collected and videos explaining what Schizencephaly is and how behind most explanations of the disorder are.  We promote awareness as we feel this is the most important aspect of this RARE neurological anomaly that our loved ones are challenged with daily.

All of us here at We Are R.A.R.E., INC. understand how hard it can be to find resources and support when learning your loved one will be facing long-term disabilities of any kind. We hope to share support for families, as well as assist in research and fund-raising for those needing help that is not provided by the medical world due to the rarity involved in many neurological disorders. Many people need equipment and devices to help them that are not covered by insurance companies. We are happy to assist with fundraisers for families, along with helping them learn how to cope and find local help, hopefully making this transition a little easier in an already difficult time. We are here to respond to emails, find local families for support in your area, assist in questions and give helpful information to help you through this diagnosis. We offer a private group on Facebook called Schizencephaly Research and Education that assists families with support and encouragement as well as a display of children that have defied everything they were told they would not do.

Company Policy

We Are R.A.R.E., INC is an organization made of volunteers that specialize in rare neurological disorders especially Schizencephaly. We are a family comes first company. We stand behind the difficult personal decisions our board, officers, and members make when choosing family responsibility over business.

We have a great team of individuals who all try their hardest to support the families we advocate for. Please be patient we us as we try to address every situation we receive as timely and professionally as possible.

Donations

All  donations received by We Are R.A.R.E., INC. will go to help with our organization’s  Medical training, literature, iPad donations, Schizencephaly Super hero club, Equipment donations, advertisement, education seminars for medical and education professionals, avocation and encouraging research and prevention by medical professionals through scholarships/grants, and hopefully assist families with medical expenses through setting up matching grants or campaigns that family and friends can support.

Please contact us through our contacts page. One of our board members and officers in our organization.