Founded by a group of people with rare eye diseases, led by Ms. Anandhi Viswanathan, APRED (Association of Persons with Rare Eye Diseases) started when a small group of members with retinal patients saw that there was a lack of awareness and information in the public domain about certain rare eye conditions. Also, not many government or private based patient-driven initiatives could be seen to address certain issues pertaining to rare eye disease patients. To plug the gap, we plan to work under the ORDI (Organization for Rare Diseases in India) and help create a platform for the betterment of rare eye disease patients
APRED will create a national platform with a view of providing medical, legal, socio-economic and psychological support to those with said diseases and hope to create a large database and network system through which we can provide the best advice and support system possible to help change lives.
APRED aims at removing barriers, creating solutions and expanding possibilities, so affected individuals can achieve their full potential. To fulfil these requirements, we plan to: • Create a network of persons with rare eye diseases across India • Create a datapool of readily accessible information ranging from ophthalmic health care to management of visual impairment To develop specialised services for the visually impaired.
Anandhi Viswanathan is a social activist in the field of visual impairment and disability. She has been volunteering with non governmental organisations (NGOs) in Mumbai and Bangalore since 2007. She is currently helping to set up a network of persons with rare eye diseases. Her interest in the field of visual impairment stems from her personal experience with retinitis pigmentosa (RP) – a degenerative retinal condition that caused the total loss of her sight at the age of 23. She continues to lead a fulfilling and rewarding life through cultivation of technological and independent living skills. Anandhi is a policy analyst at the Centre for Internet and Society, a law and policy research organisation in Bangalore. Prior to this, she had a three year stint with Genesis Burson-Marsteller, a leading communications consultancy, and worked with Wipro Infotech and SNDT University. Anandhi dreams of a rights based inclusive society where ability and not disability is the main point of consideration. .
L.Subramani is a journalist and writer who works towards crating an equal space for people with retinal diseases. Author of recently published book “Lights Out”, the story of a man’s descent into blindness (Random House India), Subramani became blind at the age of 18 due to Retinitis Pigmentosa having had normal vision until that point. In “Lights Out”, he described the process of gradual vision loss and its debilitating impact on patients and their families.
Subramani is a senior subeditor with Deccan Herald and a former trustee of Retina India. He served as executive committee member of National Federation of the Blind (NFB) Karnataka (all voluntary roles). He has written several articles about disability, assistive technology and retinal diseases.
Meera Lakshmanan is an independent researcher on accessible technology and a volunteer working with visually impaired persons. She has a banking background with a master’s degree in commerce.
APRED: Association of Persons with Rare Eye Diseases,
Tel: +91 8892 555 000