We network persons around the world who have experienced Hansen's disease and other Neglected Tropical Diseases to empower each other, to ensure human rights and to promote inclusion.
Initiative to Expand IDEA Network to Include Individuals Who Have Experienced Neglected Tropical Diseases: In 2022, IDEA launched an initiative to expand its global network to include individuals who have experienced other neglected tropical diseases. Hansen’s disease is one of 20 such diseases that impact the lives of 1.7 billion individuals around the world.
Participation in a global network, will provide individuals the opportunity to share experiences, challenges, ideas and expertise, that will build capacity and foster empowerment, as well as encourage the meaningful participation of individuals in discussions at the local, national and international levels that impact their lives.
IDEA began this initiative by identifying participants to videotape their experience with their disease, for a video montage for the Kigali Summit on Malaria and Neglected Tropical Disease that took place in June. Individuals from Ghana, Trinidad and Tobago, Guinea, Nepal, Nigeria, Sudan, Ecuador and South Sudan were interviewed. Two individuals, one from India and a second from Nigeria, participated in-person at the Kigali Summit.
In September, IDEA held its first Gathering on NTDs. An overview of NTDs was given by Margriet den Boer, Advisor, Neglected Tropical Diseases, Médecins Sans Frontières (MSF). This was followed by a presentation by Francis Gatluak from South Sudan who has experienced visceral leishmaniasis and is currently a health care worker for MSF.
Later that month, Amar Timalsina, IDEA’s Global Network Coordinator, who was one of the speakers at the Opening Plenary Session of the Neglected Tropical Disease NGO Network, shared this initiative. IDEA looks forward to working with organizations and individuals to further this initiative. For more information please email us at information@ideaadvocates.org.
Video Montage for World Neglected Tropical Diseases Day produced by Uniting to Combat NTDs in partnership with IDEA.
Photo: Members of participatory research workshop on human rights of persons who have experienced Hansen's disease. The workshop was held in Niger, with representatives from Mozambique, who took what they learned to conduct similar workshops in their country