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Nonprofit Overview

Mission: We Are R.A.R.E., INC. 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 Hoeven 18 foot banner sailing on the famous Liana's Ransom Publications. Schizencephaly: angels with broken wings Nancy grace award 2008 2016 medical conference/2017 rare convention Listed on many national health organization websites

Target demographics: Families touched by rare neurological disorders like Schizencephaly

Direct beneficiaries per year: 78

Geographic areas served: Florida

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

Community Stories

55 Stories from Volunteers, Donors & Supporters

2

Donor

Rating: 4

This is my beautiful granddaughter. She is one of the many faces of Schizencephaly. To find out more about this birth defect, caused by a fetal stroke in utero, you can go to WeAreRare.org. (You can also make a donation to help raise awareness) Although there is no cure for this, raising awareness is vital to understanding what this precious little girl is and will go through during her life. She is part of my heart and soul and I love my tinker bell to the moon

Professional with expertise in this field

Rating: 5

The medical profession can learn a lot from your organization. I know I have.
It's wonderful to see families come together through a difficult diagnosis.
It does not go unrecognized

Board Member

Rating: 5

Knowing the founder and the time and effort she gives while taking care of her own son with bilateral schizencephaly, it's proof angels do exist.
Each volunteer puts a lot of effort into the work behind what RARE does
That's a family within a family within a family.
Schizeption

Board Member

Rating: 5

Working with this organization for over a year it's been a great honor to get to know familes and stories.
Looking forward to this year's convention

Donor

Rating: 5

Keep up the terrific work in the community and with families.
It's an honor to work wit a foundation that is about helping educate this world.

Donor

Rating: 5

We are excited to meet other families at the convention this year. None of that would be possible without WeAreRare.
Thank you for your hard work and all you do

Client Served

Rating: 5

Love light and strength in knowledge. This organization took a bleak diagnosis and Gave us the strength and knowledge to feel empowered.
This year we celevated our first schizencephaly awareness day with thousands of families worldwide
How's that for support.
Thanks to all the great people behind we are rare and paving the way for us to celevate this life not listen to what the doctors tried to tell us.
Our daughter wasn't supposed to be here. It was rare that walked me through that first year and for that we are ready always going to be greatful

Client Served

Rating: 5

Not only do I understand my child's diagnosis, I now have a group that helps one another find even more answers
The first day I emailed we are rare they called that same day. We don't feel alone anymore

Volunteer

Rating: 5

Thank you we are rare!
There are no words, only love and respect for all you do for so many

Volunteer

Rating: 5

We are never in the dark now..
Walking out with the diagnosis three years ago, I was petrified of my own future and having children
I had genetic testing that could rule out gene mutations and found out mine was an isolated brain injury and stroke.
Today I talk to tricia regularly and anytime I have a question someone from rare always walks me through it and takes time to help me understand. .
For the selflessness these families have in taking time to help others with schizencephaly while they have children with the same disorder or they themselves have it, there are no words. Rare is a beacon of hope for us now.

Client Served

Rating: 5

A few months back we had concerns over my sons position and neck curving. This organization got my child a special pillow for better support and positioning.
When we were lost with no ideas they stepped up to find a solution and we now have Gabriel using the pillow all the time. So happy I know the families behind this organization also. It's great that they are active in so many families lives.
Sometimes me and my husband say we have had more support through them than any family or friends . Because they are family to us.
Thank you everyone at we are rare.