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2018 Top-Rated Nonprofit

We Are R.A.R.E. Inc.

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Nonprofit Overview

Causes: Human Service Organizations, Human Services

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: 388 families

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

65 Stories from Volunteers, Donors & Supporters

3

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

General Member of the Public

Rating: 5

We just want to say thank you for understanding the need for awareness for Lissencephaly
It's so wonderful to have awareenss and colors to share.
You all are great

1

Client Served

Rating: 5

Got a call the same day I emailed and received enough information to talk to my family doctor.
It feels great to know there is help out there

1 Holly M.1

General Member of the Public

Rating: 5

We Are Rare and the other groups associated with, has been my go to over what the doctors do or don't say. My grandson's care providers did their job, well, for the first 6 months+ of his life, but they were not informative of Schizencephaly and I had to do mostly all of my own research. Thank goodness I found WeAreRare.org upon the first page of Google! I hope to one day travel and attend an event or conference, or even just families of others affiliated with the organization.

1 Taylor26

General Member of the Public

Rating: 5

I feel so fortunate to have come across We are RARE a few years ago. I have been blessed with connecting with other parents whose child share the same diagnosis, with valuable knowledge and information including resources for my child, and the amazing opportunity to attend a very well organized conference with guest speakers to learn more about schizencephaly. Thank you!

Previous Stories
4

General Member of the Public

Rating: 5

We Are ARE has provided myself and my daughter's family so much information and resources for her condition. The support within the community of parents and family of loved ones diagnosed with schizencephaly has gotten me through very difficult times and the knowledge shared has made me feel informed, prepared, and also helped me become the passionate advocate I am today for my daughter's condition. I am so grateful for this organization.

1

Client Served

Rating: 5

Great advice on transition to whole food diets. Life changing and our Chloe is doing wonderful

1

General Member of the Public

Rating: 5

I am so grateful for this organization. It has helped me to become very knowledgeable for things for my son.

1 Summer L.

General Member of the Public

Rating: 5

Tricia is a fabulous woman. She’s established a great nonprofit that is helping lots of people around the world. Tricia reaches out to lend a hand to help with other causes as well. I am extremely grateful for all of her work and kind heart.

1

Client Served

Rating: 5

learned so much about my son through Tricia. She gave us some great advice on helping our son open his hands, Now he's grabbing for toys.
We hope to make it to the next conventions

1

Volunteer

Rating: 5

We have nothing but wonderful things to say about what this organization taught me at the convention. Thanks you so much

Professional with expertise in this field

Rating: 5

Thank you from the Lissencephaly community! And all you at RARE do.

2

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

1

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

1

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

1

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.

1

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

1

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

1

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

1

Volunteer

Rating: 5

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

1

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.

1

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.