Retinoblastoma
Retinoblastoma is a cancer of the retina in young children. RB1-related genetic findings can affect one or both eyes and may have implications for family testing and future cancer risk.
Other names and abbreviations
RB, bilateral retinoblastoma, heritable retinoblastoma, trilateral retinoblastoma, Retinal blastoma, glioma of the retina (historical)
In short
- Retinoblastoma is a cancer of the retina in young children that can affect one or both eyes, and its genetic cause may matter for family testing.
- Treatment aims to save the child's life and, when possible, the eye and sight, using local eye treatments, chemotherapy, surgery and sometimes radiation.
- High-dose chemotherapy with a return of the child's own stem cells, needing no donor, is used for some cancer outside the eye, not usually when it stays inside.
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Where transplant fits
Very strong drug treatment given in large doses, often to kill cancer cells. It also destroys the bone marrow and can cause other serious side effects. A stem cell transplant usually follows to rebuild the marrow. with Coming from the patient's own body. In an autologous transplant, the patient's own stem cells are collected and stored, then given back after high-dose treatment. It does not use a donor. is used in selected extraocular, metastatic or trilateral disease. It is not the usual treatment for disease confined to the eye and normally uses the child’s own cells, not a registry donor.
Treatment depends on the exact diagnosis, disease stage, prior treatment and the person’s health.
Key facts
- Who it affects
- Retinoblastoma mainly affects very young children.
- Usual treatment
- Treatment aims to save life and, where possible, preserve the eye and vision. Options include local eye treatments, chemotherapy by different routes, surgery and selected radiation. The approach changes substantially if disease extends outside the eye.
- Cells used in a transplant
- The patient’s own collected blood-forming cells for autologous stem cell rescue, when that procedure is appropriate.
- Where a donor fits
- Limited transplant role
Support for patients and families
These independent organizations offer information and support. JBF is not affiliated with them.
- Childhood Eye Cancer Trust (CHECT) UK retinoblastoma charity offering lifelong support from dedicated support workers, member grants, meet-ups and information for children, families and adults.United Kingdom
- World Eye Cancer Hope Retinoblastoma charity offering family support, child life and psychological support resources, virtual events, family days and social media groups.United States and United Kingdom (international reach)
Questions to bring to your care team
- What is the exact name of the diagnosis or subtype, and what does it mean for treatment?
- What is the goal of each treatment you are suggesting?
- What would make a transplant worth considering later on?
- Are there clinical trials that might fit?
- Where can our family find support during treatment?
Sources and further reading
- Retinoblastoma Treatment (PDQ)
NCI, Accessed 2026-09-05 - Indications for haematopoietic cell transplantation and CAR-T: 2025 EBMT practice recommendations
EBMT / Bone Marrow Transplantation, Accessed 2026-09-05 - Stem Cell and Bone Marrow Transplants for Cancer
NCI, Accessed 2026-09-05
Other patients are waiting for a match.
Most people with retinoblastoma are treated without a registry donor. Many people with other blood cancers and blood disorders need a donor who is a stranger.
Join the registry
JBF points you to the official registry that serves your country. It explains who can join and what donation involves.
Help a family run a drive
If someone you love needs a donor, a registration drive can add many potential donors at once, for them and for others.
Support this work
Gifts to the Jada Bascom Foundation support donor-awareness education like this guide, community outreach, drive planning and referrals to official registries.
