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Retina India helps people with retinal disorders and brings them on a common platform with physicians, researchers, counselors and other specialists
India hosts the largest blind population in the world—24 million blind people and 52 million more who suffer from other forms of visual impairment. By 2020, it is estimated that the blind population will be 31.60 million. With most government schemes and NGOs dedicating themselves to treatment of preventable corneal diseases like cataract, little attention is given to the incurable diseases that pertain to the retina.
That’s why Retina India was founded in 2009 by a group of doctors and patients suffering from retinal disorders. A founding-member, Arvind Bhartiya, a Mumbai-based chartered accountant, belongs to the latter group. “We were an informal group, trying to help other people who were suffering from retinal defects and diseases. In 2009, ophthalmologist Dr Rajat N Agrawal took the initiative to form this organisation to reach out to many more,” says
Retina India is an umbrella organisation of people with retinal disorders, their families and friends, which brings them on a common platform with experts such as physicians, researchers, counsellors, low-vision & mobility experts, and other specialists. Retina India sponsors research and maintains a database of people suffering from retinal disorders. “Unfortunately, medical science hasn’t discovered a cure for most retinal disorders but global research is on for management of retinal disorders by stem cells, gene therapy and implanting artificial retina. Our mission is to increase awareness of retinal diseases, champion the cause of patients, and increase research efforts for treatment,” says Mr Bhartiya.
“A disease doesn’t limit itself to any class—we don’t limit our services to a particular group. Anyone suffering from a retinal ailment can avail our services,” he says. Retina India also provides advice and counselling to patients and families, through meetings and by a helpline. It coordinates with other NGOs and institutions that help blind people in developing their skills.
Volunteers/members of the organisation regularly visit hospitals, medical institutions and other forums to publicise their organisation. It is not only doctors who refer patients to Retina India, but even friends and relatives of the patients, after reading their pamphlets. Dealing with retinal disorder can be hard. “These disorders are degenerative and incurable; we come across many who lose hope and go into depression when they realise their fate,” Mr Bhartiya says. He recalls the case of a girl whose parents had stopped sending her to school when it was diagnosed that she would eventually lose her sight. “The parents didn’t think that educating her was necessary, because she would not be able to see anyway. After much counselling, we could convince them to let her learn—lack of education would be more crippling than blindness. The girl is in computer training, and doing very well now,” he says.
Retina India organises regular health workshops and conventions, where patients come in contact with doctors from all over the country. “We are planning for a convention called ‘retinAware’ in September 2011 at New Delhi. This national convention will have leading national and international doctors and other experts speaking with patients and their families in an easy-to-understand language,” says Mr Bhartiya. The organisation plans to expand and reach out to more people over the next few years. However, shortage of funds has proved to be a hurdle. “Treatment of retinal disorders, professional counselling and research is expensive. Till now, we have been talking to individual donors or corporates. We plan to organise a large-scale fund-raising drive soon to tackle the problem,” says Mr Bhartiya.
Any patient, his friends or relatives, doctors, counsellors and volunteers can be a part of Retina India, or can be a part of their e-group. One can also donate to the organisation by cheque, money order or cash. All donations are eligible for exemption under Sec 80(G) of the Income-Tax Act.
Ridhi Sidhi Bhawan,
2/12, Babu Genu Road,
Mumbai 400 002
Tel: 022 2205 2308