Meet our new member – the Indian Osteogenesis Imperfecta Foundation (IOIF)

Interview with Archana Ravindra, President IOIF

As the president of the Indian Osteogenesis Imperfecta Foundation (IOIF), I am honoured to meet  you all. I am Archana Ravindra from Bangalore, India. I was born with OI and was formally diagnosed at the age of 4 by local doctors. I have tried to lead a very normal life by attending schools, college, and was the director of a small Montessori preschool for children for 17 years.
I have been fortunate to have a family with a very broad outlook into the future which helped me to explore opportunities to contribute positively to the community.

Can you tell us about the situation for people with OI in India?

India is a country with a very large population and limited exposure and access to health-related information. Although this is changing rapidly with villages modernizing; it will take several decades before we can reach the same levels as many western countries. People living in cities are better exposed and have financial affordability for medical services. Literacy being a big game changer in educating the population of rare diseases, we are slowly combating the challenges by taking small and effective steps to bring about acceptance, toleration and social inclusion in the community.

Can you tell us about your organization?

Indian Osteogenesis Imperfecta Foundation (IOIF), a non-profit entity was founded by 3 passionate people whose goals seem to align with each other on 29th May 2018. Other than me, Dr. Prashanth Inna; a specialist in Paediatric Orthopaedics has been playing a critical role in shaping our organization. We also have on board, Dr. Abhishek Bhasme; a Paediatric Orthopaedic surgeon who has been very supportive to our organization and the cause with his skills, knowledge and time for a year now. We strongly believe that awareness and education can bring about the changes we want to see in our community.

Tell us about your members!

Since its inception in 2018, our small but growing organization has just over 40 registered members with OI. However, their family members and other non-OI participants volunteer their services during events. We have been using social media like FB, Instagram and word of mouth by orthopaedic doctors from different hospitals, youth volunteers and public events to spread the word about us.

What are the biggest challenges for your organization?

As a country with a dense population and with limited resources including literacy, fist tight economy it has been quite challenging to spread the word and add more people with OI into the registry. We
find many people with OI lack a diagnosis because of too little awareness. Raising funds to host activities and funds for medical treatments such as surgeries, or provide aids like wheelchairs, walkers etc. has been challenging. We hope for this and much more to change with bringing awareness of OI to the public.

Do you have projects you want to tell us about?

Our projects include forming a database of patients and caregivers across Karnataka state (our home state). We have been trying to reach out to patients, mainly by getting in touch with the government hospitals which cater to the vast majority of patients who are financially challenged. We plan to reach out to doctors in the private health sector as well. We feel that to get more patients on board, it is better to focus on the treating physicians rather than trying to reach out through the general public.
Our biggest success so far has been the celebration of Wishbone Day in 2019. It was the first time in Bangalore a community awareness effort was ever made for OI. The event was organized in collaboration with Organization for Rare Diseases India (ORDI) and it attracted nearly 200 volunteers who met and spoke about OI with the general public.

What are your plans for the future?

Presently, we are focusing on covering the patients who come to paediatric orthopaedic centres in Bangalore. Going forward, we plan to develop a network of volunteers across the whole of Karnataka, thereby extending our coverage to the whole state.

We intend to develop a database of all the patients with OI, starting from Karnataka and then spreading to the whole of India. This would involve all the aspects of their evaluation and treatment. We plan to utilize this information to collaborate with the partner organizations across the globe with an aim to contribute to better understanding of the disease.

We intend to make a database of all the doctors involved in the care of OI in India, and utilize this to contribute to better treatment in the form of suitable medical research on OI. At IOIF, we plan to extend the awareness and education about OI to the general public, through proper utilization of the various mass media agencies.

Presently, we are arranging funds for financing the treatments of patients as and when they contact us for assistance. We plan to develop a corpus of funds so that we have ready financial assistance available. In the near future we wish to build networking with the government agencies that would help us to make suitable policies for patients with OI. In future, we endeavour to actively work in this direction.

IOIF intends to actively reach out to other organizations, form an active consortium and take the cause of OI forward