With World RB Awareness Week from May 13th, the Fight RB India group has geared itself up.
Practically 100% children survive this cancer in USA. But in our country due to late detection and diagnosis, children often present with very advanced metastatic disease and distressfully bulging protruding eyes which means the eye needs to be taken out (enucleated), the child loses vision permanently and there are low chances of survival.
Timely diagnosis and proper treatment is the key. In a unique stakeholder initiative facilitated by Cankids - FIGHT RB INDIA – 42 RB Centers across the country, specialists in the field of ophthalmology/ocular oncology, pediatric oncology, pathology and radiology, RB survivors and parents, CanKids and other NGOs, have joined together to fight against RB in young children – to Save Life, Save Vision and Save Eyes.
Vision 2020 is the roadmap to get there, authored by Internationally renowned ocular oncologist Dr Santosh Honavar, at the behest of the NGO under its Sajeev-Cankids Awareness, Advocacy and Patient Support project for Retinoblastoma.
“25 partnering RB Centers (ophthalmology + pediatric oncology) have come together with NGOs and civil society. “There are no leaders and each member has an equal voice,” says Poonam Bagai, Cancer Survivor and Founder Chairman of Cankids, that has served as a facilitator since the launch of the initiative in 2014. “It is only together we can make a difference and make a Change for Retinoblastoma in India, in the finite timeframe we have set for ourselves”
Retinoblastoma education and public awareness campaigns have been shown to increase referrals, decrease rates of advanced disease and improve survival in other low middle income countries (LMICs).
Says Dr Honavar, Director National Retinoblastoma Foundation and Director Medical Services Center for Sight, as well as the Cankids key RB Advisor, “The level of awareness of the first contact health provider in identifying the problem and making the referral is critical. The lack of knowledge by the physician first contacted by the parents is a key barrier. We have to identify the primary health care provider – the pediatrician or the ophthalmologist, educate them for early detection and ensure they know where to refer the child for immediate diagnosis and quality treatment.”
“Every year we send out awareness material and posters to all Regional Institutes of Opthalmology (RIOs) and Regional Cancer Centers,” says Cancer survivor and Awareness Officer Kapil Chawla. “This year we are also doing an Online Branding campaign on Google, Facebook and Youtube,” added 20 year old survivor, Abhishek Mishra, also part of the Awareness Team. Many RB specialists are running education programs for the doctors in different parts of the country.
Parents and 1st contact physicians must know where to go for RB treatment, and once they get there families must get full support. “Our Fight RB India Helpline number is 1800 123 6272, the Access to Care Map provides full details and contacts at partnering RB Centers where the family will be met by a Social Support team member. NGOs like ours provide funding support for diagnostics, treatment, accommodation, travel and artificial eye prosthesis,” assures Dr Bhumika Rathore, Project incharge of Sajeev Cankids RB Project. “We also provide RB centers with social support team members and this year we are hoping to provide equipment support for better diagnosis and treatment standards like Retcams, for collaborating centers.”
Practically 100% children survive this cancer in USA. But in our country due to late detection and diagnosis, children often present with very advanced metastatic disease and distressfully bulging protruding eyes which means the eye needs to be taken out (enucleated), the child loses vision permanently and there are low chances of survival.
Timely diagnosis and proper treatment is the key. In a unique stakeholder initiative facilitated by Cankids - FIGHT RB INDIA – 42 RB Centers across the country, specialists in the field of ophthalmology/ocular oncology, pediatric oncology, pathology and radiology, RB survivors and parents, CanKids and other NGOs, have joined together to fight against RB in young children – to Save Life, Save Vision and Save Eyes.
Vision 2020 is the roadmap to get there, authored by Internationally renowned ocular oncologist Dr Santosh Honavar, at the behest of the NGO under its Sajeev-Cankids Awareness, Advocacy and Patient Support project for Retinoblastoma.
“25 partnering RB Centers (ophthalmology + pediatric oncology) have come together with NGOs and civil society. “There are no leaders and each member has an equal voice,” says Poonam Bagai, Cancer Survivor and Founder Chairman of Cankids, that has served as a facilitator since the launch of the initiative in 2014. “It is only together we can make a difference and make a Change for Retinoblastoma in India, in the finite timeframe we have set for ourselves”
Retinoblastoma education and public awareness campaigns have been shown to increase referrals, decrease rates of advanced disease and improve survival in other low middle income countries (LMICs).
Says Dr Honavar, Director National Retinoblastoma Foundation and Director Medical Services Center for Sight, as well as the Cankids key RB Advisor, “The level of awareness of the first contact health provider in identifying the problem and making the referral is critical. The lack of knowledge by the physician first contacted by the parents is a key barrier. We have to identify the primary health care provider – the pediatrician or the ophthalmologist, educate them for early detection and ensure they know where to refer the child for immediate diagnosis and quality treatment.”
“Every year we send out awareness material and posters to all Regional Institutes of Opthalmology (RIOs) and Regional Cancer Centers,” says Cancer survivor and Awareness Officer Kapil Chawla. “This year we are also doing an Online Branding campaign on Google, Facebook and Youtube,” added 20 year old survivor, Abhishek Mishra, also part of the Awareness Team. Many RB specialists are running education programs for the doctors in different parts of the country.
Parents and 1st contact physicians must know where to go for RB treatment, and once they get there families must get full support. “Our Fight RB India Helpline number is 1800 123 6272, the Access to Care Map provides full details and contacts at partnering RB Centers where the family will be met by a Social Support team member. NGOs like ours provide funding support for diagnostics, treatment, accommodation, travel and artificial eye prosthesis,” assures Dr Bhumika Rathore, Project incharge of Sajeev Cankids RB Project. “We also provide RB centers with social support team members and this year we are hoping to provide equipment support for better diagnosis and treatment standards like Retcams, for collaborating centers.”
