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Experts speak: what People with TB want researchers to know

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Tuberculosis (TB) is the world’s leading infectious killer. This seminar offers the unique opportunity to hear from TB survivors and activists, discuss the key issues surrounding TB as well as the many misunderstandings which often prohibits prevention, diagnosis, and care. Chaired by Dr Toyin Togun, themes will include the pervasion of stigma, the lack of vaccine efficacy, diagnostics and linkage to care and treatment, and the oft-overlooked post-TB rehabilitation. From these four speakers, learn about the reality of living with TB and beyond, and how these experiences can inform future developments in the fight against TB.     

This event will be of interest to all researchers, students and others working in the field of TB as well as those interested in community engagement and the patient experience'.    

Speakers

From left to right: Rhea Lobo, Ingrid Schoeman, Goodman Makanda and Nandita Venkatesan
From left to right: Rhea Lobo, Ingrid Schoeman, Goodman Makanda and Nandita Venkatesan
Rhea Lobo 

Rhea Lobo is Board Member (Alt) of the Stop TB Partnership, an international award-winning filmmaker with a background in health journalism and an extra-pulmonary TB survivor. She is a strong TB advocate and co-founder of Bolo Didi (Translation: Say Sister), an informal network of women TB survivors in India who help people affected by TB navigate health systems, promote treatment adherence and counselling. She has extensive experience in working for both Communicable and Non-Communicable Diseases in organisations such as Dalberg Media, The Union and TB people. She is of Indian origin and currently resides in Copenhagen, Denmark.  

Rhea has made a number of films on health and women empowerment, with a special interest in TB. Her film on Human Rights and TB, Rights and Wrongs… A Tribute to Dean Lewis, received critical acclaim from Dr Tedros Adhanom, Director General of the World Health Organization.  

Rhea is also a member of the Stop TB Working Group on New Vaccines and is part of the task force that developed the Global Plan to End TB 2023-2030.

Ingrid Schoeman

Ingrid Schoeman is a TB activist part of TB Proof, a TB advocacy organisation based in South Africa. She survived extremely drug-resistant (XDR) TB and this experience changed her life. Today she is a passionate advocate for person-centred high quality TB care for all, free from stigma and discrimination.

Goodman Makanda

Goodman Siyambonga Makanda is a TB advocate and extremely drug resistant TB survivor. Goodman is employed by TB Proof, a TB advocacy organisation based in South Africa as well as the University of Cape Town and is a passionate TB activist in his community of Khayelitsha, Cape Town.   

Nandita Venkatesan 

Nadita Venkatesan is a journalist, health advocate and classical dancer based in India. She recently graduated with distinction from the University of Oxford. Not long ago, Nandita fought a prolonged and agonising battle against two rounds of life-threatening tuberculosis, during which she had to undergo six major surgeries, was hospitalised for several months and suffered severe side effects. She lost over 90% hearing at 24 (profound deafness), due to the after-effect of a second-line TB drug. This experience prompted her to take up the cudgels against this infectious disease and strongly voice the need for better patient-centred care.  

She has addressed prominent national and international forums including the 2018 United National General Assembly in New York and the Union World Conference on Lung Health and was a member of the WHO Civil Society Task Force on TB. She also co-founded Bolo Didi, a sisterhood of TB survivors who counsel people affected by TB. Her advocacy resulted in her being named by The Lancet as ‘A Voice of Hope for TB Survivors’. 

Please note that the recording link will be listed on this page when available.

Admission

Admission
Follow webinar link. Free and open to all. No registration required.

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