While there has been a lack of understanding and support for many people affected by rare diseases, our trust has taken the mammoth responsibility of educating the society about OI. We intend to bring more empathy and awareness and better independent lifestyle of all individuals affected by OI.
Our focus is to empower all individuals with OI and other similar rare genetic disorders. We like to bring such individuals to the forefront and into the main stream society.
We plan on achieving our goals by:
• Providing financial assistance for individuals with OI who’d like to pursue education and seek or need support while enrolled in an educational institution to attain their academic goals.
• We aim to create a network of committed Orthopedic doctors and surgeons who will guide and provide quality medical services to individuals with OI who are financially stretched at a nominal cost or for free when permitted.
• We plan to integrate natural ways to improve the quality of life of an individual with OI by guiding them with gentle Yoga practices, use of herbal- Ayurvedic and Homeopathic treatments to help with better management of OI related discomforts.
• Our mission to create a network of pharmaceutical companies and retail stores to provide medicines and other devices used for treatment of fractures such as splints, metal rods, wheel chairs, braces, crutches etc. at an affordable and discounted price.
• Provide mental health support including counseling to individuals affected by OI and their immediate family members to understand the limitations and support each other while caring for a family member with OI.
• Create a list of specialized dentists who have the training to provide in-depth services for people affected by Dentenogenesis Imperfecta (DI).
• Create a community support group to meet and exchange notes and learn from each other’s experiences.
• To create a comprehensive database of people affected with OI.
• Educate and keep everyone informed through newsletters.
• To provide a platform to encourage the socio cultural development of OI individuals and to nurture their talents.
• To conduct research in the area of medical and social aspects of OI.
• To provide vocational and soft skills training so individuals with OI can become self reliant and less dependent.
• To create awareness and sensitize public about Osteogenesis Imperfecta (OI).
INDIAN OSTEOGENESIS IMPERFECTA FOUNDATION (IOIF)
Indian Osteogenesis Imperfecta Foundation (IOIF) is a charitable foundation for a rare genetic disorder called OSTEOGENESIS IMPERFECTA (OI) or the brittle bone disease. It’s a condition in which the bones get fragile due to lack of collagen.
Our aim at IOIF is to raise public awareness about this congenital disorder and strive towards the betterment of the quality of life for those suffering.
IOIF works towards creating a database and a support system for the patients and OI families.
A society is a mixture of people with a variety of health requirements. Educating the community to propel individuals with limitations to live a dignified equal opportunity productive lifestyle is a larger than life goal for our trust!
OI is real and can affect anyone! It doesn’t consider caste, creed or the sex of the individual.
‘While the bones might break easily, the spirits never will!’
IOIF will use all its resources to help each OIer to rise up to unimaginable heights!