September 2026
M	T	W	T	F	S	S
	1	2	3	4	5	6
7	8	9	10	11	12	13
14	15	16	17	18	19	20
21	22	23	24	25	26	27
28	29	30

Obi Light Ogbonnia: The Power of Lived Experience in Sickle Cell Care

Obi Light Ogbonnia/LinkedIn

Sep 20, 2026, 12:43

Obi Light Ogbonnia: The Power of Lived Experience in Sickle Cell Care

Obi Light Ogbonnia, Founder and President of Sickle Cell Foundation and Chief Executive Officer at VTN Global Resources Limited, shared a post on LinkedIn:

“My Takeaways from the 3rd Global Sickle Cell Disease Conference Nairobi.

Some conferences give you information.
Others give you a renewed sense of purpose.

For me, the 3rd Global Sickle Cell Disease Conference in Nairobi was both, but, most importantly, it demonstrated something I believe the global sickle cell movement must embrace more intentionally: the power of lived experience.

One of the things that made this conference particularly special for me was that the organisers did not just talk about putting people living with sickle cell at the centre of the conversation, they demonstrated it.

I was invited and supported to attend not simply as an advocate, but as a 52 year old sickle cell warrior with more than five decades of lived experience, and I was given the opportunity to contribute directly through the Warriors Focus Group and Panel Discussion.

This was different from my experience at other sickle cell conferences I have attended so far. Here, lived experience was not an afterthought or a symbolic presence; it was intentionally brought into the room and into the conversation.

For me, that is leadership.

Another major takeaway is that global standards must translate into local impact. Research, innovation, policy and clinical advances only become meaningful when they reach the child, family and patient who needs them most.

I also learned that the future of sickle cell advocacy must move from awareness to action, from conversations to implementation, and from speaking about patients to speaking with them.

I return to Nigeria with new knowledge, new relationships and, most importantly, a renewed sense of responsibility through the Obi Ogbonnia Sickle Cell Foundation (OOSCF).

My biggest takeaway?

Nothing about us should be decided without us. And those who live the sickle cell experience must have a meaningful seat at the table where solutions are created.

My sincere appreciation to Biba TINGA, Global Alliance of Sickle Cell Disease Organizations (GASCDO) and the Sickle Cell Federation of Kenya for demonstrating what meaningful patient and warrior inclusion can look like.

Nairobi was more than a conference for me. It was a reminder that our lived experiences are not merely stories to be heard, they are knowledge that can help shape the future of sickle cell care.

The conversation continues. The work continues.” Obi Light Ogbonnia: The Power of Lived Experience in Sickle Cell Care