The World Health Organization (WHO) is seeking persons affected by leprosy to serve as members on the Technical Working Group (TWG) on Participation of Persons Affected by Leprosy. This “Call for experts” provides information about the Technical Working Group, the profiles being sought, the process to express interest, and the process of selection.
Background
Leprosy remains a significant global public health challenge, with around 200,000 cases reported annually. The disease continues to be associated with stigma, creating barriers to early diagnosis, treatment completion, and social inclusion. While medical interventions have advanced considerably, achieving elimination goals requires meaningful participation of persons affected by leprosy at all levels of programme policy, implementation and monitoring.
In 2011, WHO's Global Leprosy Programme (GLP) published a guidance document on strengthening participation of persons affected by leprosy in leprosy services. Developed in active partnership with persons affected by leprosy, it promoted a shift from a provider-centred approach to an individual-centred model based on shared responsibility and decision-making.
The global leprosy landscape has evolved significantly since this guidance was published. The Global Leprosy Strategy 2021–2030 sets ambitious targets; new evidence on stigma reduction, social inclusion, and community-led approaches has emerged; and the language and frameworks around patient and community engagement have been substantially updated. The human rights dimensions of leprosy have also gained formal international recognition, including through UN Human Rights Council and General Assembly resolutions and the 2017 establishment of a Special Rapporteur mandate on leprosy-related discrimination. The 3rd Global Forum of People’s Organizations on Leprosy (Bali, Indonesia, July 2025) further reinforced this imperative, calling on WHO and other stakeholders to recognize organizations of persons affected by leprosy as equal partners in programme design and implementation.
Following the recommendation of the 23rd Technical Advisory Group-Leprosy (TAG-Leprosy), a revision of the 2011 document has been identified as a priority by the GLP. WHO GLP is accordingly constituting a Technical Working Group (TWG) to review and update the 2011 document.
Purpose and objectives of the Technical Working Group
The TWG on Participation of Persons Affected by Leprosy will review and provide recommendations for updating the 2011 WHO document on strengthening participation of persons affected by leprosy, in light of the latest evidence, global frameworks, and the lived experience of affected communities, to support countries in ensuring meaningful participation of persons affected by leprosy across all levels of health service delivery.
Specific objectives:
- Review the 2011 document against the current evidence base, existing WHO frameworks (including the NTD Roadmap 2021–2030 and the Global Patient Safety Action Plan 2021–2030), and good practices in community and patient engagement.
- Provide recommendations to update the 2011 document, reflecting advances in knowledge and practice, and ensuring the updated document strengthens person-centred, rights-based approaches while meaningfully incorporating the perspectives of persons affected by leprosy, including women, children, persons with disabilities, and migrants.
Deliverables
Recommendations for a revised and updated version of the 2011 WHO document on strengthening participation of persons affected by leprosy. These recommendations will be used to develop the revised technical guidance document.
Composition and operations of the Technical Working Group
The TWG will be chaired by a member of the WHO Technical Advisory Group on Leprosy (TAG-Leprosy). A Co-Chair with lived experience of leprosy will be elected from among the TWG members at its first meeting.
The TWG will comprise approximately 16–20 members. Persons with lived experience of leprosy will constitute the majority of the group. Additional members including National Leprosy Programme managers will be identified in consultation with WHO regional and country offices. All members will serve in their individual expert capacity, and efforts will be made to ensure that the TWG is geographically representative and gender-balanced. GLP will serve as the Secretariat for the TWG.
The TWG will meet via periodic virtual meetings, typically on a monthly basis. The working language will be English, with simultaneous interpretation in required languages. The TWG will work initially for 12 months, starting from September 2026.
Periodic reporting on the proceedings and progress of the TWG will be made to TAG-Leprosy. WHO GLP will also periodically share updates on the TWG's progress with organizations of persons affected by leprosy.
Who can express interest?
This call is open to persons with lived experience of leprosy including individuals affected by the disease and, where relevant, their family members who are interested in contributing their experience and perspective to strengthening participation of persons affected by leprosy in leprosy services worldwide.
WHO particularly welcomes expressions of interest from persons with lived experience of leprosy who have:
- Experience engaging with national leprosy programmes, health services, or community-based organizations of persons affected by leprosy;
- The ability to represent and reflect the broader perspectives of affected communities, including women, children, persons with disabilities, and migrants;
- Willingness and availability to participate actively in monthly virtual meetings over a 12-month period, and to contribute to the review of technical material.
- Applications from networks and organizations of persons affected by leprosy are especially encouraged.
Submitting your expression of interest
To register your interest in being considered for the Technical Working Group on Participation of Persons Affected by Leprosy, please submit the following documents by 31 August 2026 to glp@who.int using the subject line “Expression of interest for the Technical Working Group on Participation of Persons Affected by Leprosy”:
- A cover letter, indicating your motivation to apply and how you satisfy the criteria above. Please note that, if selected, membership will be in a personal capacity; therefore, do not use the letterhead or other identification of any employer or organization
- A brief curriculum vitae or biography, describing your experience and, where relevant, your engagement with organizations of persons affected by leprosy; and personal details e.g. e-mail ID and nationality;
- A signed and completed Declaration of Interests (DOI) form for WHO Experts, available at https://www.who.int/about/ethics/declarations-of-interest.
After submission, your expression of interest will be reviewed by WHO. Due to an expected high volume of interests, only selected individuals will be informed.
Important information about the selection process and conditions of appointment
Members of the TWG must be free of any real, potential or apparent conflicts of interest. To this end, applicants are required to complete the WHO Declaration of Interests for WHO Experts, and selection as a member of the TWG is, amongst other things, dependent on WHO determining that there is no conflict of interest or that any identified conflicts could be appropriately managed (in addition to WHO's evaluation of an applicant's experience, expertise and motivation and other criteria).
All TWG members will serve in their individual capacity and shall not represent any government, commercial entity, research, academic or civil society organization, or any other body or institution, other than reflecting their own lived experience. They are expected to fully comply with the Code of Conduct for WHO Experts (https://www.who.int/about/ethics/declarations-of-interest). TWG members will be expected to sign and return a completed confidentiality undertaking prior to the beginning of the first meeting.
At any point during the selection process, WHO may schedule a telephone or virtual conversation with an applicant to ask questions relating to their experience and to assess whether the applicant meets the criteria for TWG membership.
The selection of TWG members will be made by WHO in its sole discretion, taking into account the following (non-exclusive) criteria: relevance and depth of lived experience; ability to reflect the broader perspectives of affected communities; communication skills; and ability to work constructively with people from different cultural backgrounds. Selection will also take account of the need for geographic diversity, especially from low- and middle-income countries, and for gender balance.
If selected by WHO, proposed members will be sent an invitation letter and, where applicable, a Memorandum of Agreement. Appointment, as a member of the TWG, will be subject to the proposed member returning to WHO the countersigned copy of these documents.
WHO reserves the right to accept or reject any expression of interest, to annul this open call process and reject all expressions of interest at any time without incurring any liability to the affected applicant or applicants and without any obligation to inform the affected applicant or applicants of the grounds for WHO's action. WHO may also decide, at any time, not to proceed with the establishment of the TWG, disband an existing TWG, or modify its work.
WHO shall not in any way be obliged to reveal, or discuss with any applicant, how an expression of interest was assessed, or to provide any other information relating to the evaluation/selection process, or to state the reasons for not choosing a member.
WHO may publish the names and a short biography of the selected individuals on the WHO internet site.
TWG members will not be remunerated for their services in relation to the TWG or otherwise. Travel and accommodation expenses of TWG members to participate in in-person meetings, where applicable, will be covered by WHO in accordance with its applicable policies, rules and procedures.
The appointment will be limited in time as indicated in the letter of appointment, in line with the TWG's initial 12-month mandate.
If you have any questions about this “Call for experts”, please write to glp@who.int before the indicated deadline.