A common theme amongst our GRIN Disorder families, and many of our friends with rare diseases, are the feelings of loneliness and isolation. These feelings are exacerbated when the diagnosis can take years of searching, each test coming up empty. Even after receiving a diagnosis, such as GRIN Disorder, you realize most doctors do not understand the condition and how to treat it. This takes many of our families online, searching for a community. Somewhere to belong.

We recently asked our #GRINDisorder families what having a GRIN community has meant to them.

A reminder that they are not alone

When we finally got a diagnosis, it was a relief, but I had nowhere to go for support or information…Having this community has been the best thing for us. It means absolute understanding and feeling less alone in our journey. Jessie M. (GRIN 1 Mom)

It helped us to know we are not alone and that others truly know our fight. Kelly L. (GRIN2A Mom)

It has given us a place to ask questions and to remind us that we are not alone…We would be lost without it! Becky C. (GRIN2D Grandmother)

Rare parents are the experts of their child’s condition

It has been informative. It has given us hope, guidance and support. Carrie Marie F. (GRIN2A Mom)

I just find so many parents inspiring and we love that there is just a huge focus on medical and scientific progress and finding new roads. We are so thankful for this community. Andrew M. (GRIN1 Dad)

Knowledge and support. Alanna W. (GRIN2A Mom)

We become like family

Having this GRIN community has been a lifeline. Like a family, together we have common ground in most uncommon circumstances. Accessing the wealth of knowledge and understanding in this community, helps me feel less powerless. I am so grateful for this network of wonderful people! Roslyn S. (GRIN2D Mom)

To sum it up best, Family, support, advice, hope, information, love and understanding. Sherin A. (GRIN2B Mom)

Having a community of parents who understand the unique challenges you face can make your worries feel less daunting. They provide motivation to keep pushing forward and hope for what can seem like an uncertain and unpredictable future. Connecting with others who share common experiences create lifelong friendships and help to fill a void that opens when your search for a diagnosis began.