We empower children, families, and survivors through connection, inclusion, and shared experience.
Many people affected by retinoblastoma want to learn all they can about this cancer, and be actively involved in the process of advancing care – for patients now and in the future. And they seek community with others who share their experiences.
One Retinoblastoma World brings families and survivors together from around the globe. We celebrate their stories, strengthen their voices, and nurture community with medical professionals and researchers throughout this world-leading conference.
The Challenge
Retinoblastoma is rare. Most parents and survivors will never meet another person with this shared experience – especially someone from another country, culture, or stage in the Rb journey. That isolation can make the challenges of care, survivorship, and advocacy feel even heavier.
While global medical meetings are powerful tools for advancing care, they are often inaccessible or overwhelming for families. Survivors and parents may feel unprepared to speak up in highly clinical spaces. They may hesitate to ask questions, raise concerns, or suggest improvements when the context feels unfamiliar, intimidating, or emotionally charged.
Parents often cannot attend at all when there is no provision for child care. And while children with retinoblastoma and their siblings carry deep emotional experiences, few programs offer the specialized support they need to process, connect, and thrive.
When the retinoblastoma family is not actively included in a conference focused on achieving the best patient care worldwide, the whole community loses vital insights. Families and survivors lose an invaluable opportunity to be seen, heard, and empowered. And the potential for optimal care is diminished.
Our Solution
One Retinoblastoma World integrates a full Family Focus into the conference, ensuring patients, survivors, and families are heartily welcomed and fully included.
Parent and Survivor Participation
- Dedicated Family Day sessions prepare attendees for the scientific program, offering space to review key topics, ask questions, and share stories. They spark conversation and empower parents and survivors to participate confidently throughout the full meeting.
- Survivor and parent speakers share their lived experiences during the entire formal program, ensuring family perspectives guide shared learning and collaborative action.
- Community-led panels and open discussion gives families and survivors a platform to raise real-world concerns, explore solutions, and help shape the future of Rb care.
- Social gatherings and informal networking foster deep relationships that transcend borders and diagnoses, nurturing hope, resilience, and solidarity across our global community.
Child Life Program
Our dedicated child life program supports all children attending One Rb World – diagnosed children, their siblings, and the children of adult survivors and conference speakers.
- Led by qualified Child Life Specialists, the program offers developmentally appropriate play, creative exploration, emotional support, and group activities.
- Children receive personalized guidance to help them understand their Rb story, express big feelings, find confidence and calm in their experience, and embrace the joy of childhood.
- This program is not childcare – it is a specialized therapeutic experience that empowers children to grow and thrive, while giving parents peace of mind to fully engage in the conference.
- This unique gathering of children affected by Rb in diverse ways fosters early peer connection, mutual encouragement, and lasting friendship. Our young participants see that they are not alone – they are part of a caring community where their journey is shared and valued.
Focusing on family at One Rb World, we create a space where every voice matters – children, parents, and adult survivors. All are seen, empowered, and supported, and our global community grows stronger together.
Volunteering was an incredible opportunity to witness first-hand the powerful connections that were formed. It is heartwarming to see the retinoblastoma community coming together to offer support to one another.
The One Rb World 2024 conference was beyond amazing for my 15-year-old daughter, Savannah, and exceeded all my expectations. It was life-changing. Every aspect was incredible, from the speakers and the panels to the other families and the medical professionals.
As exhausting and emotional as it was, I had to hear every word! The amount of love and support in the room was overwhelming at times, and I still can’t get over how every person’s story was unique yet always had some detail that was exactly our experience.
That was reassuring for some reason: to know we weren’t the only ones. I felt like the conference took me right back to Savannah’s initial diagnosis and all the way to her future as a Thriver in her 30s, 40s, and beyond.
She of course, connected and made new friends and missed almost the entire conference! But that was the absolute best result. She wanted to meet others who had experienced retinoblastoma, and now she knows she is not alone.
