Elysium is committed to a threefold approach: supporting survivors, raising awareness and promoting an holistic approach. We seek to inspire empathy and action, advocating for prevention and the eradication of noma.
Supporting survivors
Support for survivors needs to go beyond the acute phase of noma. Since 2022, Elysium has met and established informal support groups with survivors across six countries (Burkina Faso, Mozambique, Niger, Nigeria, Senegal, Switzerland) providing platforms for survivors to share experiences, find solace, and empower one another. These are safe spaces to discuss what happened to us and what can be done by each of us but also collectively.
We have also started to reflect on more concrete ways to empower survivors. Often, they couldn’t attend school because of noma and today they need to be trained and find their own way to contribute to the future of their families and make a fruitful contribution to society. Finally, we are now working with Sentinelles on starting an Income Generating Activities programme that we hope to launch in Senegal in 2024.
“Elysium’s members based in countries where noma persists promote prevention and treatment in their communities and I know they are making a difference.”
Raising awareness
In our journey to highlight the shadows cast by noma, raising awareness stands as a fundamental pillar of our mission. We recognize the power of visibility and education in sparking change, hence our multifaceted approach to awareness.
Our strategy harnesses the connecting power of social media as well as traditional media to reach a broader audience. We organize and participate in events that bring communities together, from film screenings depicting the struggles and triumphs of survivors to educational presentations shedding light on critical aspects of prevention, treatment, and support. We facilitate individual meetings and, when possible, gatherings among survivors, creating spaces for mutual aid, learning, and collaboration. Additionally, our advocacy efforts lead us to places of influence, where we address policymakers directly, armed with the undeniable testimonies from our experiences.
By placing survivors at the forefront of our awareness campaigns, we ensure authenticity and impact. As noma survivors, we share our own stories and embody our own truths. This empowers us as champions of health promotion and disease prevention.
Promoting a holistic approach
A holistic approach to noma recognizes the crucial importance of integrating survivors into all initiatives related to the disease and its response strategy. Our lived experience as survivors offers invaluable insights to overcome challenges associated with noma. Our comprehensive approach aims to address survivors' immediate needs, thus promoting sustainable recovery and reintegration into society. As part of this process, survivors have the opportunity to become local health advocates if they wish.
By sharing our personal experiences, we play a vital role in promoting oral health and educating the public on early noma prevention and treatment. This contribution is critical not only in combating the disease but also in empowering us as survivors at the forefront of change and awareness initiatives. Actively involving survivors in these efforts values their unique perspectives. This inclusive approach is essential to contribute to noma eradication and ensure that survivors play an active role in shaping the future of prevention and care in their communities.
Through a growing network of allies and partners, we engage in meaningful collaborations to develop integrated strategies addressing noma risk factors, combating stigma, and establishing best practices. As part of its allies programme, Elysium is proud to collaborate with many organizations involve in the fight against noma like the International Society for Neglected Tropical Diseases, Inediz, the Noma Action Group of the University of Toronto, the Centre for Applied Human Rights at the University of York, Médecins Sans Frontières, Hilfsaktion Noma e.V., Fondation Sentinelles, and the Geneva Health Forum.