Retinoblastoma (RB) eye cancer is rare.
Typically seen in young children & babies.
9/10 children with RB can be cured.
Early detection can also save vision and eyes of the children.
The Fight RB India National Stakeholder Group was formed on August 30, 2014, with 19 participating institutions. The name of the institutions are as follows CanKids , Max Hospital, KGMU, Apollo (Delhi), CFS (Delhi), CSF(Hyderabad), Hinduja, Shroff, CMRI Kolkata, AIIMS, NH Bangalore, Shankara eye hospital (Chennai), TMH Mumbai, MJ Shah, PGI Chandigarh (Ophthalmology), PGI Chandigarh (Pediatric), RP Centre, and DMC. Subsequently 10 meetings have been held all over the country with participation from 56 key RB treating centers, Civil Society Organizations and stakeholders including specialists In the field of Ophthalmology/ Ocular oncology/ Pediatric Oncology/ Pathology & Radiology. Annual stakeholder group meetings are held regularly to ensure continuous collaboration, knowledge sharing, and updates on advancements in the fight against Retinoblastoma
Signs and Symptoms
Diagnosis of RB
An eye doctor (ophthalmologist) will screen for further testing, including: medical history, physical exam, blood tests, EUA (eye exam under anesthesia), ultrasound, and MRI. In case of spread, then tests may include bone marrow and cerebrospinal fluid, and imaging of brain and spinal cord.
Treatment of Retinoblastoma
RB treatment therapies depend on age of child, genetic factors, if the center of vision is affected by the tumor, if the tumor has broken apart in the vitreous, and presence of multiple tumors.
Chemotherapy – single or multiple medicines to shrink the tumor OR Chemotherapy is injected around the eye (periocular)in the eye, directly in the eye(intravitreal), in the opthalmic artery (OAC), Intraartetial (IAC).
Radiation – in advanced cases of RB, external beam radiation therapy (EBRT)/ Intensity-modulated radiation therapy (IMRT). It can help maintain vision and prevent the spread of cancer.
Focal Therapy – to treat the tumor directly when the tumor is very small. Laser therapy, Cryotherapy, Plaque radiotherapy(brachytherapy).
Surgery- to remove the eye, if necessary. This is called enucleation. Initially the surgeon will place an eye implant. Afterwards the child can get a beautiful artificial eye.
Autologous Bone Marrow Transplant (Auto BMT) – very rarely, when RB spreads to the brain or cerebrospinal fluid or to bones and lymph nodes, intensive chemotherapy may be followed by auto BMT.
We Provide Assistance with
Early Diagnosis, Quality Treatment, and Patient Support
At a Good RB Centre Near Your Home.
Network of 56 partnering hospitals across India provide assistance with early diagnosis, quality treatment, patient support, genetic counselling and survivorship services for children with retinoblastoma, survivors and families in India.
CanKids Services for Retinoblastoma
CanKids Hospital Support Unit (RB) Projects
Partnering with RB centers, Providing social support services, care centers, social support teams, bridge financing, building capacities, providing equipment,
supporting research, creating awareness, and care co-ordination between centers across the country.
Fight RB India Genetic Testing and Counselling Servic
Promoting and Supporting Research
JYOTIRGAMAYA PATIENT ADVOCACY GROUP (LED BY KIDSCAN KONNECT)
ARTIFICIAL EYE
SUPPORT FOR SOPHISTICATED AND EXPENSIVE RB INTERVENTIONS
DISABILITY CERTIFICATE
Disability Certificate Information
Purpose:
- To facilitate the availing of a unique disability identity card to every entitled childhood cancer patient or survivor.
- To facilitate the child with blindness to a blind school where they continue their education.
Eligibility:
- For Disability certificate eligibility and process please refer disability certificate SOP
EDUCATION
Process for admission in a Blind School
- CanKids Social Support Team to identify the child with Retinoblastoma (Bilateral) at CK treating centers.
- Social Support Team to counsel patient and their parents about continuing their education after the treatment.
- Social Support Team to identify the blind school for the brail education nearby the child’s native place and speak to the school staff.
- Regular follow-up with the parents to understand to ensure the child go admitted in the school.
- Facilitate the admission process for the child in a particular school
● If disability certificate is required contact Shekhar ([email protected]) at PPCC center at Delhi
● SST should also give information about the scholarship available for the children in Nursery to Higher Education.
Process for the admission in a Regular School
- CanKids Social Support Team to identify the child with Retinoblastoma (Unilateral) at CK treating centers.
- Social Support Team to counsel patient and their parents about continuing their education after the treatment.
- Social Support Team to identify the school nearby the child’s native place and speak to the school staff.
- Regular follow-up with the parents to understand to ensure the child go admitted in the school.
- Facilitate the admission process for the child in a particular school.
- If disability certificate is required contact Shekhar ([email protected]) at PPCC center at Delhi.
- SST should also give information about the scholarship available for the children in Nursery to Higher Education.
Scholarship for Children
Child who has taken admission in any of the schools is eligible for a yearly scholarship. Please find below the details of scholarship eligibility. You can also reach out to Mehroz Bano ([email protected])
Retinoblastoma Patient Advocacy Group (RB-PAG)
• To collect the information relevant to the RB in order to make the society aware about the same.
• To carry out the need assessment to identify the services/assistance required for patient/survivor & their family.
• To bridge the gap between the patient & their family and services provider to ensure them service smoothly.
• To advocate for the rights of the patient and their family.
• To strengthen the RB PAG qualitatively and quantitative.
World Retinoblastoma Awareness Week from May 13
CanKids KidsCan and Fight RB India network strengthen resolve to “Save Lives, Save Eyes, Save Vision”
Retinoblastoma (RB) is a rare eye cancer that afflicts young children and babies. Yet an estimated 1,500-2,000 children are diagnosed with RB every year in India. If detection, diagnosis and proper treatment is not timely, a child with advanced RB loses sight permanently and their very survival is at stake.
The tragedy is that RB is curable in 9 out of 10 children. Low awareness and information about this form of cancer at every level—the public, first contact physicians, and even pediatricians means that detection and referrals are inordinately delayed.
CanKids spearheads the Fight RB India project that brings together 56 RB treating centers with NGOs, civil society organizations and stake holders including specialists in the field of ophthalmology, ocular oncology , pediatric oncology , pathology and radiology .The aim is to provide support at every level for management and improved survival rates of children with RB.
Several individuals have made an indelible impact in the country’s struggle against RB. In 2024, among those recognized with CanKids’ Change for Childhood Cancer in India Gold Hero Awards are Kanaka Sirpal and Dr Santosh G. Honavar. Kanaka set up the Sajiv CanKids Retinoblastoma Fund in memory of her husband Sajiv Sirpal. The Fund has enabled 83 percent access to care compared to the national average of 42 percent, partner centres are providing a network of treating centres with standard of care treatment and support while a majority of centres use state of the art therapeutic interventions like brachytherapy, IAC and genetic testing. That is just to mention a few of the ways that the fund has benefited children with RB.
Internationally recognised Dr Honavar. Director Medical Services, Center for Sight Hospital is a visionary in the field of RB research and treatment. Under his leadership, a 20-20 monograph has been prepared, showing the way to the country to impact RB treatment, care and support.
As every year on Global Retinoblastoma Awareness Week , CanKids steps up campaigns for awareness creation, health information and education about RB. The case for public awareness is critical. CanKids holds conferences and workshops about RB with pediatrician oncologists, experts, health professionals and other stakeholders at its 141 partner hospitals. Banners are prominently displayed at important locations like CanKids’ Canshalas and Home Away from Homes with key messages about RB. Social media like Facebook, Twitter, LinkedIn too are utilized to drive awareness.
Fight RB India Resource Directory for Access to Care is valuable for parents and first contact physicians who would otherwise run from pillar in a hunt for Retinoblastoma Treating Centres . The directory enables them to locate the centres for RB treatment and support.