Person with lived experience joining NCDA Board
NCD Alliance

Lived experience shaping the way ahead in NCD Alliance

27th February 2024

NCD Alliance is delighted to announce that Chikhulupiliro Stanley Ng’ombe, a lived experience advocate from Malawi and a member of the Our Views, Our Voices Global Advisory Committee, is joining the NCD Alliance Board of Directors as an observer.

NCDA is committed to ensuring that people living with NCDs are actively involved in all aspects of the NCD response that affect them, including governance, policies, programmes, and services, as set out in the Global Charter on Meaningful Involvement of people living with NCDs. Promoting meaningful involvement of NCD civil society and people living with NCDs is a part of the NCDA Strategy (2021-2026) and being people-centred is a core NCDA value.

Lived experience insights and perspectives will be central to shaping a people-centred NCD response and providing the evidence and impetus needed ahead of the UN High-Level Meeting (UNHLM) on NCDs in 2025. This timely appointment strengthens and enriches the main governing body of the NCDA with important NCD lived experience insights.

 

The NCD Alliance Board took the decision at the end of last year to strengthen lived experience representation on the Board, and undertook a comprehensive selection process. Chikhu joins the Board as an observer for the remainder of this board term, until May 2025.

“NCD Alliance has always been committed to elevating the leadership of people living with NCDs. Now we're taking that commitment to the next level by having a dedicated lived experience representative on the Board. I am very happy to welcome Chikhulupiliro Stanley Ng’ombe to the NCD Alliance Board of Directors. With his insights, we are poised to steer NCD Alliance towards an even bigger impact on the lives of people living with NCDs.”

– Monika Arora, NCD Alliance President.

“Being appointed to this position is an honour and a responsibility, which I accept. I hope to, in the time allocated, use my lived experience, existing networks of people with lived experience and my professional experience to bring in the much-needed change for people living with NCDs through practical action. With the strong powerful voices of people living with NCDs, we attempt to make universal health coverage and care for NCDs a reality, “nothing about us without us."

– Chikhulupiliro Stanley Ng’ombe.

Chikhulupiliro Stanley Ng’ombe

Chikhulupiliro Stanley Ng’ombe is from Malawi. When he was 8, he was diagnosed with acute lymphoblastic leukaemia. Due to the lack of availability of treatment in his country, he had to travel to South Africa to receive expensive medical care. Thanks to his support network he was able to beat cancer; however, in the process of the treatment, he was also diagnosed with epilepsy, which he has been living with ever since. You can find out more about Chikhu’s experiences with healthcare systems, life with NCDs and his advocacy journey in his NCD audio-diary.

In 2011, Chikhu founded a non-profit in Malawi called Cancer Survivors Quest, addressing critical needs. He continued his advocacy work and in 2015, he established a regional civil society alliance in Malawi dedicated to the NCD agenda. Notably, he served as the first secretary, demonstrating his leadership and commitment.

Chikhu currently contributes his expertise as a Project Manager for the Epilepsy Warriors Foundation in Malawi, expanding his impact within the NCD community. Within the NCD Alliance, Chikhu remains an active participant in the Our Views, Our Voices Global Advisory Committee, bringing his lived experience and advocacy expertise to guide the initiative.

A champion for people-centred NCD action, Chikhu joins the NCDA Board with a strong commitment to promoting meaningful involvement of lived experience advocates in policy discussions. During his time, he hopes to contribute to reducing global inequities in NCD treatment globally. His advocacy experience and lived experience insights will prove invaluable in NCD Alliance’s delivery of its strategy.