At the Annual Meeting of OIFE in August 2018, we got a pleasant surprise – a membership application from the Nigerian OI-organization. The Board voted and we were happy to welcome OIF Nigeria as our new associate member, the second one from the African continent.

The OI Foundation Nigeria, founded by Tarela Aghanti in March 2016, is the sole organization set up to address the needs of people born with Osteogenesis Imperfecta (OI) in Nigeria and are working with other African and international OI-organizations.

“Our charity is working towards achieving a society in which the needs of people  living with Osteogenesis Imperfecta (brittle bone disease) in Nigeria and around the world are understood, respected and fully met.

We will work towards improving the quality of life for people diagnosed with OI in the country by providing advice, raising awareness and providing information. We also provide treatment, surgeries, wheelchairs and mobility equipment needed for comfortable and independent lives with good quality.”

OIF Nigeria is now in contact with children and their families in Nigeria identified with OI in Lagos State, Enugu, Abuja and Oyo State, Porth Court, Delta State and we believe there are more in other states. We are presently in communication with these families, connecting OI patients together, sharing experience, lifting each other up, encouraging and supporting each other. We are connecting patients with OI professionals and connecting interested OI health professionals in Nigeria with international OI experts. We are also providing Zoledronic acid medication for people affected

Currently, OIF Nigeria is working really hard towards changing the beliefs of individuals as this condition and disability as a whole is spiritualized and can be associated with witchcraft, Evil Spirit and shame. In some parts of Nigeria, it could be said that a disabled child is cursed, which leads to many children being abandoned by their families, which is one of the biggest challenges that we face in our country.

OI also known as brittle bone condition is a rare condition. This is why we are committed to raising awareness on OI to help change the mindset, understanding and beliefs of our people so these children could be accepted, loved and cared for, as this will also help with inclusion in our society. We believe awareness is the key to change, so we go on air (TV, Radio, social media etc) through which we have been contacted for support and help by parents whose children are having symptoms and features of OI.

In the future we would love to create and raise more OI awareness in remote villages in Nigeria to find more OI patients and families, to be able to support them with treatments, equipment and surgeries to help improve quality of life.

From the 16th to 22nd of November we are having a five days distribution of wheelchairs & mobility aids, for both oi children and adults and people with physically challenges. This in order to support, promote independence and improve the quality of life each person can live.

OIF Nigeria National Annual Conference is on the 17th November 2018. We hope to see as many people there as possible, both from Nigeria, but also from other African countries if they are interested.

OIF Nigeria can be found online at www.oifnigeria.com and on Facebook.