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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

3

Client Served

Rating: 5

They never hesitate to answer a call or email.
We are so grateful that RARE was able to provide our family with support as well as help for equiemt we could not get ourselves

3

Board Member

Rating: 5

Working with this foundation I have learned so much about the brain and fetal stroke.
The families and their perseverance never ceases to amaze me. It's an honor to be a part of it all

3

Volunteer

Rating: 5

It's an honor and a privilege to be a part of such an amazing group.

3

Board Member

Rating: 5

My son was diagnosed with absence seizures in 2010. His Eeg showed 200 seizures per day. This was life changing for our family! We have suffered through medicating my child and awful side effects, experiencing breakthrough seizures- absence, atonic, myoclonic, grand mal, petite mal, simple partial, complex partial, generalized, and learning he has brain atrophy. I have advocated for him and learned from every experience, now 5 years later, he is in remission from his seizures!! :)
We have worked closely with nutritionists, geneticists, neurologist, psychologists, pediatricians, schools, attorneys, government, family, friends, and this organization - We Are R.A.R.E., in efforts to get to a place of success and improvement.
I encourage every one to visit our site and see how you can participate.
I am currently a director with the We Are R.A.R.E. board of directors, as of early 2015. #share wearerare.org

3

Volunteer

Rating: 5

The founder, Tricia Dennis is not the type of parent to simply accept defeat. She keeps on fighting and researching to the bone. Much respect and many Thanks!

3

General Member of the Public

Rating: 5

My daughter has schizencephaly and this foundation has been wonderful..so much support and information. Tricia Dennis is amazing, we love her. She's helped so many families.

3

Board Member

Rating: 5

I am so grateful to be a part of this company and helping families.

3

Client Served

Rating: 5

Amazing support when our family did not have answers and needed support
We Love you guys

Previous Stories
3

General Member of the Public

Rating: 5

I cannot thank this company enough for the information and support they have provided me and my child for school.
For many years feeling isolated and stressed I made a call to this company not expecting to hear back right away they returned my call within minutes and helped me get a plan together for my sons therapists and school that has now been implemented and he is doing wonderful.
For a parent facing the unknown they have been so knowledgeable and helpful, more than any doctor we have been to.
An outstanding company!

Comments ( 1 )

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wearerareTricia 08/08/2014

Thank you so much!

3

General Member of the Public

Rating: 5

Thank you so much for being the motivation for so many families

3 Tricia28

General Member of the Public

Rating: 5

We love our families and will continue to do whatever we can to help this dosroder

3 Lisa375

Client Served

Rating: 4

Before finding We are Rare, my family was lost. We are Rare has provided us information that doctors could not even provide. They are not just a non profit organization, they are a family!

Comments ( 1 )

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wearerareTricia 08/10/2014

Oh Lisa. Thank you. We love your amazing family. Big huge hugs

2 Jody30

General Member of the Public

Rating: 4

Hi I'm Jody I live in Canada but follow Tricia very closely because of her knowledge and commitment to her son Noah's disabilities! I have a 7yr (almost 7) great nephew named Noah as well with Schiz and personally have learnt and grand amount from this woman! She is a poster face of this RARE disease and a wealth of knowledge! Please help her Quest for nonprofit and help others like myself and children like both our Noah's get attention they deserve to get research etc whatever needs done...
Thank you Jody McKay

Comments ( 1 )

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wearerareTricia 08/08/2014

Oh Jody, Thank you so much for this incredible review!

4

General Member of the Public

Rating: 5

Before finding We Are Rare I felt so alone. My son was diagnosed with Schizencephaly before birth. There was so little information on schizencephaly. I thought my questions would never be answered about the disease and I thought there would never be help or support. After finding We Are Rare I have been able to breath knowing that there is an active organization that has put schizencephaly on the map. I know We Are Rare will always be a resource, a support system and a backbone to help my son and I through this journey. It's amazing how many people that We Are Rare have helped. I am honored that I can associate with this organization and words can't describe how much better I feel after being connected with the organization.

Comments ( 1 )

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wearerareTricia 08/08/2014

Thank you so much for the amazing review Andrea. We love u

2 Noel3

Volunteer

Rating: 5

I call Tricia "Super Mom" because she not only handles taking care of her own children but she is all about helping those who need it the most as well. Her love, passion and determination have created a charity that is most deserving of community support!

Comments ( 1 )

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wearerareTricia 08/08/2014

Thank you so much for this wonderful review!

2

Volunteer

Rating: 5

Tricia is a wonderful mother and a warrior in this disorder. Her expertise and commitment to helping others fighting this disorder has forever changed our lives. I would be lost without her and this companies support.

Comments ( 1 )

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wearerareTricia 08/08/2014

Thank you so much Keely!

2

Volunteer

Rating: 5

we are rare has given many hope in a world where there was little information available. Now we are not alone.
Thank you everyone at we are rare

3

Client Served

Rating: 5

Last month I contacted Rare and they were able to provide several doctors in my area that were familiar with this disorder. We have been able to change my daughters life for the better with the information they provided and the services they gave us.
The members are families with children battling this disorder and in my opinion they truly are experts and have helped us so much

Comments ( 1 )

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wearerareTricia 08/08/2014

wonderful review. Thank you Greg

1

General Member of the Public

Rating: 4

Thank you for the help and continued support from We Are Rare, They have changed our lives forever.

1

Client Served

Rating: 5

I cannot say enough about this company. Thank you for all you do
Donna

1

General Member of the Public

Rating: 5

Very helpful company with a friendly staff that never hesitates to help