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Volunteering Oportunities

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 Listed on many national health organization websites

Target demographics: Families touched by rare neurological disorders like Schizencephaly

Direct beneficiaries per year: 74

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

40 Stories from Volunteers, Donors & Supporters

3 Kristine21

Board Member

Rating: 5

This non-profit has been a beacon of hope and support. The information provided and support offered were pivotal in learning about and coping with my son's diagnosis of Schizencephaly. They are compassionate, responsive, and insightful. I'm now fortunate enough to be part of the team and to provide support for families coping with a diagnosis of severe Schizencephaly. Fantastic organization!

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!