Patient and family organizations — retinoblastoma¶
Access checked: 2026-09-01.
| Organization | Region | Verified public role | URL | Check |
|---|---|---|---|---|
| World Eye Cancer Hope (WE C Hope) | Global / US-based | awareness, family support, survivor health, professional capacity, One Rb World | https://wechope.org/ | live page opened 2026-09-01 |
| Childhood Eye Cancer Trust (CHECT) | United Kingdom | lifelong support, awareness, research funding, practical grants and family events | https://chect.org.uk/ | live page opened 2026-09-01 |
| Canadian Retinoblastoma Society | Canada | education, advocacy, peer support, family network and research engagement | https://www.rbsociety.ca/ | live page opened 2026-09-01 |
| CanKids KidsCan retinoblastoma program | India | partnering-hospital network, patient support, genetic counselling and survivorship services | https://cankidsindia.org/retinoblastoma/ | live page opened 2026-09-01 |
What the verified sites add¶
World Eye Cancer Hope¶
- Frames life, sight, lifelong survivor health and family wellbeing as simultaneous goals.
- Provides public and professional education on leukocoria and strabismus.
- Convenes patients, survivors, families, clinicians and researchers through One Rb World.
- The site is global in aspiration; this verification does not quantify country-level service coverage.
Childhood Eye Cancer Trust¶
- States that it is the UK charity dedicated specifically to children, families and adults affected by retinoblastoma.
- Lists one-to-one support, membership, events, awareness, research funding and practical travel support.
- Its public story/news hub was used only to establish recurring experience domains; no individual narrative was extracted.
Canadian Retinoblastoma Society¶
- States that it is volunteer-run and provides education, advocacy and peer support.
- Describes a screened family support network, community events and support for patient-engaged research.
- The events page includes eye-loss and patient/caregiver topics, supporting the themes of visible difference and peer connection.
CanKids KidsCan¶
- Describes a network of 56 partnering hospitals and retinoblastoma-specific early diagnosis, treatment support, genetic counselling and survivorship activity.
- Connects family support with a prospective national clinical program rather than separating access from research.
- The stated network size is organization-reported and was not independently audited.
Inclusion and exclusion rules¶
- Included only if an organization-specific public page was live and described a retinoblastoma role.
- General childhood-cancer charities are omitted unless the fetched page showed a retinoblastoma-specific program.
- Social-media groups, private peer forums and fundraising pages centered on one child are excluded.
- Website presence does not establish charity registration, service quality or representativeness.
Geographic gaps¶
No organization was added for Latin America, continental Europe outside the UK, the Middle East, East Asia or most African countries because a stable organization-specific retinoblastoma site was not verified in this pass. This is a retrieval gap, not evidence of absence.