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!
Our grandson was diagnosed at 4 months (3 yrs and 2 mo ago). My daughter's pediatrician not only couldn't pronounce it she had no idea what it was and told us to "wait till Monday and call someone." Thanks to Tricia and this group of people we may be rare but we are not alone. We learned more from this organization than the doctors we first contacted. We never have to go through any of Andrew's diagnosis alone. As Andrew continues to learn and grow we continue to educate and spread awareness. Thank you Tricia and We Are Rare for giving hope to all those facing the unknown. God bless us all!
I've known the founder Tricia since we were in high school. You'll never see passion like hers in everything she does.
She has always been that person people went to for advice and it's clear she's made it her life mission to stay that way with her son's disorder.
She and the board she works with all pull things together and stay active in the community raising awareness
When we were in the hospital this year we were constantly being checked in and provided a hand out sheet from this foundation to give to the hospital.
It helped so much and helped them understand how Schizencephaly works
Thank you RARE for helping me understand the blended diet and seizures my daughter has
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.
Not sure where we would all be without the support an encouragement from this organization it has been wonderful and they are extremely informative about Schizencephaly which is not a well known ir researched issue. This organization is Amazing
I've learned so much from we are RARE that I'm able to help provide information to my son's doctors now.
Always there with great support
I'd ge lost without this organization. So supportive and insightful
Thank you RARE
I am so greatful for this organization! October of 2015 my daughter age 10 at the time had a grandmal seizure. Doctor told me everthing is ok and it sometimes just happen to people once, no big deal she doesn't need meds. A week later same thing happens and now absent seizures. No one can explain it. we get an admit to the hospital and finds out that she was born with bilateral open lip schizencephaly......we were blown away and didint know what to say or do. We were told its little to no information and they could only treat her symptoms on what to come. I prayed vigorously. I real don't like facebook but I knew it had everything. I typed in schizencephaly and found my second family, my refuge, my outlet and support from We Are R.A.R.E. I can't imagine life with this group!