News & Events
03/01/2024
Zole in Nigeria
It strengthens the bone by increasing bone density and corrects the imbalance between bone reabsorption and bone formation which occurs in osteogenesis imperfecta (OI). Zoledronic acid infusions are most effective in children when they are given every six months.
So excited to support children in Nigeria with brittle bone disease to receive treatment with Zoledronic acid medicine at St Charles Hospital under the supervision of Dr P. Metieh the Managing Director of St Charles Hospital Surilere Lagos, Nigeria on the 20th of December 2023.
We couldn’t have been able to do this without donations from individuals like you who have supported us with their donations over the years.
Would like to partner with us to change lives? You can do so by bank transfer You can donate directly to the UK charity bank account.
Lloyds Bank.
Osteogenesis Imperfecta Foundation Network
Acct no: 41885768
Sort code: 309089
And through Paypal
paypal.me/oifn
We make a difference together.
Thank you in advance.
EVENTS
NEWS
OIFN collaboration with Clevenard TV, raising OI awareness across the nations.
01/12/2023
EVENTS
21/11/2023
EVENTS
Most children in Africa are being deprived of more than just a basic human right when they are not given a fair opportunity to live healthy lives, immunisations, adequate nutrition, access to health services, education, protection, clean water, and proper hygiene. Their societies are losing their most valuable resource, which means they can never fulfil their aspirations and our common aspirations for a better world.
If we want a healthy nation and a healthy economy, we might want to think deeply about investing in children’s health because they are the future of the nation. So why not join me today at 6 pm UK time as we discuss this important issue? Hope to see you soon.
JOIN US ON: 21ST NOV 2023, TIME: 6 PM GMT
Topic: Investing in children’s health and its economic benefits.
Live on YouTube and Facebook:
Youtube Link: https://www.youtube.com/Clevenardtv
Facebook Link: https://www.facebook.com/clevenard77
13/09/23
EVENTS
Vision 6060 Project
The OI vision 6060 project is a new project we started this season, and it is aimed at supporting oiers, people with
their vision, where they would be assessed by a well-trained and qualified optician and given the appropriate glasses
to them. These glasses where donated by individuals here in the UK and the USA. We hope for this project to
continue as we believe it has benefited the beneficiaries through the feedback that have already come through to
us. (I personally, had a lot of people coming to say thank you to me on the day as they mentioned how much
difference it will make in their daily living). This is new projected by the organisation, we had the first ever
Vision 60 60 project on the 13 th of October 2023, same time with the OI conference at the same venue. We
had 65 individuals come for the eye assessment and 58 were administered appropriate glasses. For more
details visit our Facebook page.
EVENTS
EVENTS
OIFE TOPICAL MEETING 2023 PROGRAMME
The OIFE Topical Meeting 2023 program is now available to view and download on our website. This 2-day international conference is aimed at anyone with an interest in osteogenesis imperfecta and other rare bone diseases. The focus of the meeting is on pain and its impact.
What is the meeting about?
The 2023 OIFE Topical Meeting is the first conference of its kind to cover topics such as the impact of pain on fatigue, sleep, mobility, family, relationships, and more.
The meeting will offer an opportunity to present and hear about the latest research, treatment methods, and news related to these topics. The program will include assessment, measurement, and management of physical and psychological challenges due to pain in OI and other rare bone diseases.
The OIFE Topical Meeting 2023 program can be viewed and downloaded online here.
Who should attend?
Anyone interested in the topics is welcome to attend. This includes:
Healthcare professionals & researchers with an interest in OI in general
Healthcare professionals & researchers with an interest in pain, fatigue, sleep, mobility, etc
OI- and rare bone community (people with OI and other rare bone conditions, family members, staff, and volunteers)
Professionals with an interest in other rare bone conditions
Industry representatives
The conference will be relevant also for professionals, who do not work specifically with pain in OI or other rare bone conditions.
Where is it?
The event takes place at the Scandic Continental Hotel in Stockholm, Sweden, on 9-10 June 2023. The hotel is in the heart of Stockholm and easily accessible from Stockholm Arlanda Airport (right next to the Airport Express rail terminal).
How do I register or book accommodation?
Registration and accommodation booking is open until 1 June. Please see our registration/accommodation booking form for further details.
In the words of our Conference Chair:
“OIFE’s next topical meeting is about how living with pain can affect all parts of life. And equally important – how do different aspects of life lead to pain? To find the right balance and the right solutions, we must work together and share our knowledge and experiences – professionals, researchers, industry, and everyone who has, or lives with someone who has, osteogenesis imperfecta and/or other rare bone diseases.”
Lena Lande Wekre
Senior Consultant and Conference Chair
TRS National Resource Center on Rare Disorders, Norway
We hope to see you there!
OIFN receives AWARD
Awareness of brittle bone is gaining ground due to the immersing work done by the founder of the OIFN, Tarela Aghanti, in Nigeria, which has called the attention of the AS+S cooperate organisation. On the 10th of August 2023, Joanne Egarewa represented the founder, Tarela Aghanti, to receive the CSR Award in Lagos, Nigeria.
Poem by Stephanie at the Cooperate Social Responsibility Award Ceremony OIFN in Nigeria.
Poetic Stephanie,
At the Award Night. Reading her poem, she put it together.
Below are the words, a creative and poetic lady with OI.
In a world where strength and fragility meet,
I find my place, walking a unique beat.
Living with OI, a journey complex,
Balancing life’s demands, I strive to connect.
With bones prone to fractures, I move with care,
Yet my spirit remains unbreakable, aware
Of the challenges faced, day in and day out,
I embrace my limitations, without a doubt.
Life’s path may be filled with hurdles and pain,
But resilience blossoms amidst the strain.
I cherish each moment, big or small,
For they shape my story, standing tall.
Connections are forged, a community is strong,
Supporting each other, where we belong.
Through empathy’s embrace, we unite,
Sharing our triumphs, in darkness or light.
So let’s celebrate the journey we tread,
With OI as a part, we rise ahead.
Balancing life’s scales, finding our way,
With strength and determination, day by day.
By Stephanie
Gallery
Our Gallery
CSR Awards Nigeria
10th August 2023
We want to take this moment to express our gratitude to Yeye Agnes Shobajo, Managing Director of AS+A COMMUNICATIONS, for the Award, Cares and Hospitality. Award presented to the founder Tarela Aghanti for raising awareness on Osteogenesis Imperfecta (OI) also known as brittle bone condition on the 10th of August 2023.
And THANK YOU to every member of OIF Nigeria who was present (Mrs Joanne and family / Mr Robert and family) and those who could not attend.
Tise with Members of the PMAN – Performing Musicians and Artists of Nigeria. Dr Tee Mac Iseli, in glasses 2nd right, was the 1st President of PMAN at the 2023 Corporate Social Responsibility (CSR) Awards held at Lekki, Lagos, Nigeria, promoting OI awareness after his song performance “We are the World.”
We remain Unbreakable.
Photo with HE Erelu Dr. Olusola Obada CON former Deputy Governor of Osun State/former Minister of Defence with her colleague Dr. Bimbola Ogunkelu Former Minister of African Integration flanked by OI Ambassadors in Nigeria.
Joined by the former President of the African Public Relations Association Mr. Yomi Badejo-Okusanya 1st right and beside him is HRM Yeye Tobalase of Ikate Elegushi Kingdom Yeye Aderonke Elegushi in photo with OI Ambassadors in Nigeria.