https://thenomaproject.org/home daily 1.0 2021-01-07 https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1586269497771-PATDIZ0TJGRHQCG0QJ9R/image-asset.jpeg https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1601326573190-PWYHYVUE7NTY2VI7M2I4/Burden.jpeg https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1601327389719-LG31LVK53B0JLR6HZJC1/Alexandre+Guye_07.jpg https://thenomaproject.org/realities daily 0.75 2021-01-29 https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1601892334933-6M8BKH4FUVPXXMXWLR10/Morad+Echarkaoui_DSC03916.JPG Lived Realities - Whilst extreme poverty is known to be a social determinant of noma, there has been little exploration of its relational influence on the lived experiences of those affected by noma. Prior fieldwork led by the Noma Project researchers Adamou Moussa-Pham and Baratti-Mayer suggests that costs of treatments at specialised medical centres, alongside the expenses of multiple possible journeys and consequent loss of household income combine with conditions of poverty to prohibit affected families from accessing timely healthcare. As such, poverty appears to be both a social determinant of noma and a consequence of the disease. Outside of Africa, even less is known about noma’s risk factors and social determinants. First reported in Laos in 2002, Srour has seen and interviewed a total of 49 noma survivors. https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1601903654259-9RI1UAU88FUCGX4FFPDE/Noma+historical+accounts.png Lived Realities - Historically, noma was present in Europe and North America until the early 20th century. Due to the improvement in the standard of living, better hygiene and access to health care, noma disappeared in these regions, with a notable re-emergence in Nazi concentration camps and in European countries subjected to extreme food shortages during World War II ( Enwonwu et al; Bos & Marck). These historical accounts suggest that severe chronic malnutrition is a major risk factor of noma. Contemporary case reports highlight factors repeatedly associated with noma in Africa, which are therefore considered to be the probable risk factors of the disease. Baratti-Mayer et al found that severe chronic malnutrition, which could begin in utero, recent febrile disease and imbalance in the oral microbiota are main risk factors of noma. https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1601894043951-IZWIG88LJU1MZJDEUMOH/Service+of+Plastic+and+Reconstructive+Surgery%2C+Geneva+University+Hospitals.png Lived Realities Drawing on secondary literature to document violations of human rights , Cismas has drafted the only report that systematically examines noma from a human rights perspective (Cismas/UN HRCAC; ). Empirical evidence, scarce as it is, indicates that noma survivors experience significant infringements of their human rights. One study notes that of 200 noma survivors with sequelae, 46% suffered discrimination and 32% social exclusion (Abdou Hassane). Anecdotal situations depict children with noma being perceived as a curse and a shame brought onto the family, and hidden away for fear of social ostracization (Baratti-Mayer et al) - this virtually equates with a death sentence, given the fulminant progression of the disease and the high death rate of untreated cases. Other severe challenges faced by survivors include securing access to education and employment, with women specifically affected at the intersections of socialised expectations of their gender and perceptions of the disease. Exploring the relationship between risk factors & social determinants and violations of human rights provides a more holistic, relational understanding of individuals’ health and the corresponding obligations that states have under international human rights law to ensure the realisation of the right to health, among others. It also provides acknowledgement of ‘the constitutive role of power in the broader determination of health’ (Kenyon et al) whether this is wielded by state actors - national and local decision- and policy-makers and public health workers implementing policies on the ground - or by non-state actors - families, traditional healers, religious and traditional leaders. The design of specific actions that states must pursue, obligated as they are under international human rights law to progressively realise the human rights of all, must reflect these complex realities on the ground. https://thenomaproject.org/framing daily 0.75 2020-11-05 https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1601920536648-0OHAJA1B7X4HLAUF8ALS/Morad+Echarkaoui_DSC03274.JPG Noma's Framing - The international medical community’s activities on noma have broadly coalesced around the communication of the disease as a globally significant public health matter demanding expansive research, awareness and intervention (Baratti-Mayer et al; Farley et al). This advocacy has oftentimes occurred in collaboration with NGOs, such as our project partners Sentinelles, Hifsaktion Noma, Winds of Hope and the No Noma Federation and Médecins Sans Frontières. A key dimension has included more recent advocacy of noma’s inclusion in the WHO list of NTDs (Srour & Baratti-Mayer) - an interdisciplinary Task Force on the topic was established in 2017. Studies strongly indicate that the formal recognition of noma as a WHO NTD could have positive implications for noma in terms of research, treatment and prevention (Ravinetto; Cismas/UN HRCAC). It could also transfer noma ‘from the medical field into the political domain’ (Iyorah) and therefore eliciti the attention of policy-makers and donors. However, whilst an NTD framing of noma has been persuasively applied in theory (Srour et al; Ravinetto; Cismas & Adamou Moussa Pham), it is yet to be realised in practise. https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1601932593801-WOR8EDSWIBVVL6EDD9Y8/HRCAC%2BStudy.jpg Noma's Framing - International human rights mechanisms have developed and employed a human rights framing of noma. In a 2012 study, t he UN Human Rights Council Advisory Committee presented noma as a cause and effect of numerous human rights violations, in particular of the child’s rights to health, food, water and sanitation, housing and education, as well as to equality and non-discrimination ( Cismas/UN HRCAC ). Annexed to the UN HRCAC study are the Human Rights Principles and Guidelines to improve the protection of children at risk or affected by noma. The UN Human Rights Council - the most important intergovernmental body dealing with human rights - has explicitly recognised this soft law instrument and encouraged States to implement it (HRC Res. 19/7). The instrument has since been taken up by the UN Committee on the Rights of the Child in its review process of Ethiopia and Eritrea’s implementation of obligations arising under the Convention on the Rights of the Child. https://thenomaproject.org/what-is-noma daily 0.75 2020-11-05 https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1601306485140-9QLVX87TLGD8NDNJTP0C/Morad+Echarkaoui_DSC03263.JPG What is noma? https://thenomaproject.org/burden daily 0.75 2020-11-05 https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1601595699307-IORETSHR7MFYNNM055OG/Map.png Epidemiology & Burden - As noma predominantly affects young children of the poorest families in countries with weak health systems, consultation and treatment rates are likely very low (5-20%) and the mortality rate very high (90%) (WHO). The overall health burden of noma in terms of disability-adjusted life years (DALYs) remains to be thoroughly assessed. Source of the map: HFL Wertheim et al 2012 based on 1998 data from a WHO-led Delfi consultation https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1601850259934-05SBC00Q7MHOVNKMBGBJ/Sentinelles.jpg Epidemiology & Burden - Epidemiological analysis of patients’ records The Noma Project partner Sentinelles is a pioneer in the treatment of noma. An analysis of the records of noma patients treated at Sentinelles care centres in Niger and Burkina Faso over the period 1992-2019 will allow the calculation of the annual rate of consultation for acute noma among the population of the districts covered by the organisation’s activities. Relying on this data the incidence based on the rate of consultation by survivors will be estimated. https://thenomaproject.org/project-team daily 0.75 2021-06-01 https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1600951355851-62QJOHMSKAH8BPPSVHSA/Emmanuel1.jpg Project Team - Prof. Emmanuel Kabengele Mpinga Project coordinator Institute of Global Health, University of Geneva https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1600951334303-6ZC2HPMN47RTY4MP7E87/Ioana.jpg Project Team - Dr. Ioana Cismas Project co-coordinator Centre for Applied Human Rights & York Law School https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1600951491178-UCJHZKTWDIFK1URZ1L2J/Mirko.jpg Project Team - Dr. Mirko Winkler Project co-cordinator Swiss Tropical and Public Health Institute https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1600951513454-UYUW5ER4JESK18IN2ONI/Marie-Solene.png Project Team - Marie-Solène Adamou Moussa-Pham Principal member Institute of Global Health, University of Geneva https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1600951309431-TWKDFT9SJKSZA3EKLPFS/Denise.jpg Project Team - Dr. Denise Baratti-Mayer Principal member Institute of Global Health, University of Geneva & Service of Plastic and Reconstructive Surgery, Geneva University Hospitals https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1600951538252-GL52SBMVSIN1LUR1W62B/Leila.jpg Project Team - Dr. Margaret Leila Srour Principal member Health Frontiers, Vientiane, Laos & Health Volunteers Overseas https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1600951562442-ZS8OUKU3ON63TXWULUN1/Peter.jpg Project Team - Dr. Peter Steinmann Principal member Swiss Tropical and Public Health Institute https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1600951586367-6XM5UP2VC1YINQ4K4K83/Alice.jpg Project Team - Alice Trotter Principal member Centre for Applied Human Rights & York Law School https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1600951258206-39N06R1JPDQFF3MAHCSX/Gabriel.jpg Project Team - Dr. Gabriel Alcoba Associated Member Médecins Sans Frontières, Switzerland & Geneva University Hospitals https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1611912994082-KTTVF4AFANEA8UT3Y4PH/Curdin.png Project Team - Curdin Brugger Associated member Swiss Tropical and Public Health Institute https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1611913743547-ISMIVYKUEJXHEG12EHK7/Anais.png Project Team - Anaïs Galli Associated member Swiss Tropical and Public Health Institute https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1601290305841-TCB06BKWBMTZQ5H85ETB/Emilien.jpg Project Team - Dr. Emilien Jeannot Associated Member Institute of Global Health, University of Geneva https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1600951633189-7CZG8OOVX8CI16Y74BW5/Moubassira.jpg Project Team - Dr. Moubassira Kagone Associated member Centre de Recherche en Santé de Nouna https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1622537738352-0LYMGDO9BW82Y3CO1IHP/Maina.jpg Project Team - Maïna Sani Malam Grema Associated member Université Abdou Moumouni de Niamey & Laboratoire d’Etudes et de Recherche sur les Dynamiques Sociales et le développement Local, Niger https://thenomaproject.org/partners daily 0.75 2020-11-05 https://thenomaproject.org/publications daily 0.75 2022-07-17 https://thenomaproject.org/news daily 0.75 2022-07-17 https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/f4a72992-5764-4fe4-baa6-3c0848d37dde/2019_Mpinga_Scientific_Report+copy.png https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1623166081362-RHVXNBPXW7MX0VW6PQYC/unnamed.jpg https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1623165714171-TO1GGLQU7J28UZIWEA37/Screenshot+2021-06-08+at+16.14.31.png https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1623166081362-RHVXNBPXW7MX0VW6PQYC/unnamed.jpg https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1601843143239-40U616J2WJ6GCLYYPEAQ/PLOS+photo.png News & Event - In August 2020, M. Leila Srour and Denise Baratti-Mayer published a viewpoint making a strong case for the inclusion of noma in PLOS Neglected Tropical Diseases. The publication is available open source online and in pdf format. https://thenomaproject.org/funders daily 0.75 2020-10-06 https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1601291806669-VJL07VEJYOQ5R3SETSY7/Snis_logo_Media_Classic.png https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1601292372530-WJI9TH67VFZTF65NYU1P/HilfsaktionNomalogo.jpg https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1601295170247-WUCX60AF222SJN16PMDC/SSI+logo.png https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1601292987376-NQXNSMQZ030JGS5T7TLE/NomaHilfeSchweizlogo.png https://images.squarespace-cdn.com/content/v1/5e624ea1b53d653768470cb6/1601293443301-ZFR86QTM6DTRT21VHPZL/WindsofHopelogo2.png