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.
BOARD OF TRUSTEES:
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!
Paranjyothi is a retired Engineer by profession and has been an active volunteer for the welfare of children since her early days. She believes that life should not be just allowed to go by, but instead, we should think of ways of giving back to society. Her passion is to help children and she finds happiness in seeing them smile. She is connected with Youth For Seva (YFS), a social organisation for over a decade. Here, she has been teaching children in government schools and also participating in events that uplift their overall well being and health. During her volunteering tenure, she adopted many students, mentored them and has even funded their education. Paranjyothi is also associated with Vidya Chetana for raising funds and getting sponsorship for children’s education.
In the course of volunteering, she came across children with OI and on learning that their families require a lot of assistance, Paranjyothi decided to help them in all the ways that she can.
Dr. Abhishek S. Bhasme is a consultant in Paediatric Orthopaedic surgery in Bangalore. With over 6 years of experience in orthopaedics, his area of interests include paediatric bone infections, skeletal dysplasia and deformity correction. He has been actively involved in caring for patients with OI and children with deformity. His vision for IOIF being , to create a self sustaining and supporting community for the OI people by people with OI.