Indian Osteogenesis Imperfecta Foundation (IOIF) is a registered public charitable foundation established to support people with a rare genetic disorder called OSTEOGENESIS IMPERFECTA (OI). It’s a condition in which the bones get fragile due to lack of collagen.
While there has been a lack of understanding and support for many people affected by rare diseases, our foundation has taken the mammoth responsibility of educating the society about OI. We intend to bring more empathy and better independent lifestyle for individuals affected by OI.
Vision – Every person with OI in India leading a fulfilling life.
Mission – To understand the needs of people with OI and create a supportive environment to help them lead a life of their choice.
Objective – Through dialogue at awareness sessions, support groups and community of professionals we work to understand the needs of people with OI.
Activities to fulfill on the objective:
- Scholarships for students having OI
- Counseling for individuals with OI and caregivers of people with OI
- Providing quality medical services to people with OI either by connecting them to competent doctors or pay for their treatment or provide medicines or devices such wheelchair, crutches etc at a nominal cost.
- Support groups for individuals with OI and caregivers of people with OI to strengthen each other on their journey of life with OI.
- Provide a platform for people with OI to develop, nurture and showcase their talents
- Providing vocational and soft skills training for people with OI
- Integrating natural ways to improve the quality of life of an individual with OI through yoga, use of Herbal- Ayurvedic and Homeopathic treatments
- Public awareness by giving talks at colleges, through walkathons, music events and more.
- Conducting research in the area of medical and social aspects of OI.
- Organise seminars and conferences on OI
For the above activities a community of the following is to be created:
- People with OI
- Caregivers of people with OI
- Orthopedic doctors and surgeons who deal with people of OI
- Hospitals wherein in surgeries can be conducted at subsidized costs
- Pharmacies that provide medicine and devices at subsidized costs
- Specialized dentists trained to treat people with Dentenogenesis Imperfecta.
Archana Ravindra Palahalli – Founder President Being a person with OI did not stop Archana from establishing and successfully running a Montessori for over 16 years in Bangalore. After dedicating much of her adult life to moulding children to be creative, confident and compassionate individuals she decided to close the school in 2015. She realized that having OI did not stop her from leading an independent, fulfilling life and if she could do it, many more can do it too. With this context she set out to establish IOIF. To empower individuals with OI to lead a life of positive contribution to the community. To empower them to fulfill on their dreams is her dream!
Dr. Prashanth Inna – Treasurer Dr. Inna is a pediatric orthopedic surgeon at Manipal Hospital, Bangalore. Having treated patients with OI he very well understands the needs of such people and has joined hands with IOIF to create awareness within the medical fraternity about OI, as one of the biggest challenges is detection of OI.
Vijay Soni – Trustee Vijay is a software professional living in Mumbai. He was diagnosed with OI and since childhood he has had about 40 fractures and multiple surgeries. Having fragile bones did not deter him at any stage to complete his education or fulfilling family responsibilities and living an independent life. He started his career in 2005 as a Software Engineer in Mumbai, and now has over 13 years of experience of working with various reputed companies. As quoted by Walt Whitman, Vijay believes in “Keep your face always toward sunshine – and shadows will fall behind you.” Vijay has joined hands with IOIF to create awareness, make a positive contribution and a difference in the lives of other OI individuals in India.