We build safe, supportive community around the world, one conversation at a time.
When childhood cancer strikes, connection, understanding and shared experience are vital so the whole family can navigate diagnosis, treatment, follow up care, and life beyond well.
Our social media groups offer safe spaces where families, survivors, and professionals can come together to support one another, build knowledge, and nurture hope.
The Challenge
Retinoblastoma is a rare cancer. Most families and survivors have never met someone else affected by it outside their hospital. As a result, many people feel isolated in their experience – emotionally, practically, and socially. The unfamiliar language of the cancer and its treatment, the life-altering decisions, the long-term implications – all of these are compounded when we face them alone.
While online communities offer a powerful way to connect, they also come with risks. Supportive intentions can sometimes result in confusing, conflicting, or even harmful advice when individuals respond without full knowledge of the situation.
Misunderstandings about treatment, diagnosis, geographic limitations, and socioeconomic context can delay vital care or erode trust in medical professionals. Heated conversations, misinformation, and emotional triggers can overwhelm families already carrying a heavy burden.
Social media is most powerful when it brings people together in empathy, understanding, and shared purpose. To exchange information and – most important – to see and support one another through the complexities of retinoblastoma.
Our Solution
WE C Hope supports a vibrant and growing community of moderated Facebook groups that foster safe, informed, and compassionate connection around the world.
Global Community Group
Our main closed group — Retinoblastoma (WE C Hope) — welcomes anyone affected by or interested in retinoblastoma, including survivors, family members, advocates, professionals, and researchers. This community offers a space for sharing lived experiences, asking questions, offering encouragement, and growing together in understanding.
USA Treatment Center-Specific Groups
We host and support a range of groups for families and survivors treated at specific US hospitals, creating smaller, localized communities where members can discuss care, follow-up, and life beyond treatment with those who share the same medical teams, settings, and familiar experiences.
Geography and Demographic-Specific Groups
We actively support and promote independent and partner-led groups tailored for specific populations – including mothers, fathers, teens, adult survivors, bereaved families, and communities across Canada, the UK, and more. Each space reflects the unique needs and experiences of its members.
Explore the different Facebook Groups
In addition to managing and promoting these groups, we offer guidance on how to participate safely and constructively in online forums. Our two-part blog series on Social Media Support offers practical insights into how to respond effectively, how to distinguish experience from opinion, and how to engage with care. These resources help build the respectful, informed community our families need.
Social Media Support: 7 Ways to Respond Effectively, and Why Our Responses Matter
We believe peer support can be life-changing – even life-saving – when it’s grounded in empathy, good information, and trust. Whether someone reaches out in fear, grief, hope, or curiosity, we want them to find a circle of people who truly understand and care.
