Ben’s Friends has launched a new community for moms raising children with rare diseases and chronic conditions and we are inviting you to join
share the community with other families who are affected. 70% of rare genetic disorders start in childhood.
Similar to Ben’s Friends other support communities, membership is free. The community is a safe place to express yourself and ask for assistance. Participation can be anonymous. There is no need to wait for a weekly or monthly meeting in order to connect with other warrior moms who understand the unique challenges, time and energy it takes to raise a child with a rare condition or illness.
On Rare Disease Day back in February, we heard from NORD’s state ambassadors and other participants about their daily tribulations. Mothers were discussing everything from balancing a job, battling a chronic illness themselves, feeding tubes, and traveling to patient trials on behalf of their kids. A major grievance amongst the moms was the difficulty in accessing relevant resources.
Whether your child is school aged, a teen, or transitioning to adult activities, the community is for strong, passionate and caring moms who are dedicated to supporting each other. We encourage them to ask questions and share stories. Each stage of a child’s life will bring challenges to navigate but with support like Warrior Moms Living with Rare Disease. We hope to make life work a little better for child and family.
If you’re a Warrior Dad or a Warrior Gran, you’re welcome, too.