Ben's Friends - a peer-to-peer support platform for patients with rare diseases

Ben’s Friends started as an initiative born from a personal need: the desire for emotional connection and guidance during Ben’s recovery from a life-threatening brain hemorrhage. After realizing that others who had gone through similar experiences could offer the support he so desperately needed, Ben created an online community where AVM (Arteriovenous malformation) survivors could share their stories, challenges, and coping mechanisms. The success of this initial effort led to the expansion of the platform into a broader network that now hosts over 40 different communities for people living with a variety of rare diseases, from Von Willebrand’s Disease to Atrial Septal Defect.

What sets Ben’s Friends apart is its grassroots, peer-to-peer approach. Unlike many traditional patient support systems, Ben’s Friends isn’t about expert advice or top-down guidance. Instead, it offers a safe, supportive space where patients, caregivers, and families can learn from one another and form meaningful connections. The network is supported by a dedicated team of volunteer moderators who are either patients themselves or relatives of patients. These moderators are key to ensuring that the communities remain compassionate, responsive, and welcoming for new members who may be feeling lost, scared, or overwhelmed by their diagnosis.

The core of Ben’s Friends is its focus on the emotional and psychological aspects of living with a rare disease. The platform helps members not only to understand their conditions but also to find strength and coping strategies. As Ben himself experienced, many patients face an emotional rollercoaster when adjusting to their diagnoses, often feeling isolated and unsure of how to navigate the complexities of their illness. Ben’s Friends bridges this gap by providing a space where patients can share their emotional experiences and advice.

The organization complements the work of other nonprofits that focus on awareness and fundraising, by concentrating on creating and maintaining these compassionate, supportive communities. With over 200,000 monthly visitors and a rapidly growing network of communities, Ben’s Friends continues to expand its reach, ensuring that patients around the world never have to face their illness alone.

For more information visit:
https://www.bensfriends.org/
https://www.youtube.com/watch?v=YBeRFnJkleU