Since its founding in 2007, Ben’s Friends has already created 40+ online patient communities. Each one of them is focused on a specific rare disease or chronic illness. Patients, friends, relatives and caregivers can join and become members.
Through these communities, they learn about the experiences of others like them. They become familiar with other people’s stories, their struggles, their hopes. They learn about possible medications and the different ways to cope with the disease.
Ben’s Friends’ Caregiver Support Community, on the other hand, was created specifically for caregivers, including friends and relatives, of rare and chronic illnesses patients. It is different from other caregiver communities that focus on caring for the elderly. These communities are definitely helpful when it comes to providing care. However, caring and advocating for loved ones who are affected by rare diseases have its own unique challenges.
Our Caregiver Support Community will allow members to get in touch with other people who know too well the challenges of caring for someone who is affected by a rare disease.
It is a safe online space. Each membership application is screened and everyone is advised to use screen names only so that they can maintain anonymity. The community is also monitored by our volunteer moderators, to ensure that everyone is contributing to the peaceful and supportive atmosphere that we promote in all our communities.
If you or anyone you know is providing care for rare disease patients, we invite you to become a member of Ben’s Friends’ Caregiver Support Community.
Change the lives of patients and their loved ones by supporting Ben’s Friends via Patreon. Sign up here.