Resources

The COVID-19 Crisis and Persons Affected by Leprosy Fact Sheet

Persons affected by leprosy have been especially impacted by the worst consequences of the COVID-19 pandemic. Governments, NGOs, civil society organizations, and organizations of persons affected by leprosy have enacted policies and programmes intended to support persons affected during this crisis, although there are still gaps. The Global Partnership for Zero Leprosy’s COVID-19 Emergency Advocacy Working Group and UN Special Rapporteur Alice Cruz gathered data from 100+ persons affected and partners, representing 24 countries, on available programmes and resources offering support to persons affected during this time. This fact sheet highlights some of the measures taken by governments and NGOs in the represented countries, and underscores the need for increased support.

Updated: 11/06/2020

Advice about leprosy and COVID-19

Advice about leprosy and COVID-19 from the WHO Global Leprosy Programme, ILEP, UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members Alice Cruz, and GPZL. Includes guidance on diagnosis and clinical management of leprosy patients, public health aspects of leprosy in the COVID-19 pandemic, and services for persons living with disabilities and/or psychosocial consequences of leprosy.

Updated: 10/04/2020

Challenges and a Path Forward for Leprosy during COVID-19: Working Group 1 Report

GPZL’s Working Group 1, the Leprosy Emergency Operations Committee (LEOC), works to address and resolve issues in the supply of drugs for the treatment of leprosy and leprosy reactions, and other forms of care such as wound care, disability care, and social care, and supporting the work of National Leprosy Programmes. Working Group 1 includes representatives from GPZL member organizations and from Novartis/WHO with anti-leprosy drug supply expertise.

The LEOC held virtual meetings April – August 2020. LEOC members conducted two surveys: one to national leprosy program managers and the other to NGOs and CSOs. The members discussed the survey results, identified the countries most affected, and contacted program managers to understand the situation and the need for support. Working Group 1 found that COVID-19 was having a direct impact on clinics, MDT supply, patient access to care, and NGO activities. Read the full report below.

ILEP Technical Commission 2020 Nomination Form

The ILEP Technical Commission and the ILEP Advisory Panel, which consists of women and men affected by leprosy, both come up for re-appointment in October.

The appointments will be made by the ILEP Members’ Assembly, and we are now inviting nominations. Find the terms of reference and nomination form here. Nominations are due by 21 September.

Technical guidance on Reaction Management and Disability Prevention

Technical guidance from the WHO on the management of reactions and prevention of leprosy-related disability.

Frequently Asked Questions About SDR-PEP

What is SDR-PEP for leprosy prevention? Why is SDR-PEP considered an important intervention for leprosy? How well has SDR-PEP been tested?

Research Report: Diagnostics

The GPZL’s Research Agenda Working Group analyzed current research and developed priorities in several key areas that could accelerate progress towards zero leprosy. Download the report on diagnostics here.

Research Report: Vaccines

The GPZL’s Research Agenda Working Group analyzed current research and developed priorities in several key areas that could accelerate progress towards zero leprosy. Download the report on vaccines here.

Research Report: Stigma

The GPZL’s Research Agenda Working Group analyzed current research and developed priorities in several key areas that could accelerate progress towards zero leprosy. Download the report on stigma here.

Research Report: Operational Research

The GPZL’s Research Agenda Working Group analyzed current research and developed priorities in several key areas that could accelerate progress towards zero leprosy. Download the report on operational research here.

Research Report: Epidemiologic Modeling

The GPZL’s Research Agenda Working Group analyzed current research and developed priorities in several key areas that could accelerate progress towards zero leprosy. Download the report on epidemiologic modeling here.

Research Report: Disability

The GPZL’s Research Agenda Working Group analyzed current research and developed priorities in several key areas that could accelerate progress towards zero leprosy. Download the report on disability here.

Research Report: Digital Health

The GPZL’s Research Agenda Working Group analyzed current research and developed priorities in several key areas that could accelerate progress towards zero leprosy. Download the report on digital health here.

Research Report: Post-Exposure Prophylaxis (PEP)

The GPZL’s Research Agenda Working Group analyzed current research and developed priorities in several key areas that could accelerate progress towards zero leprosy. Download the report on post-exposure prophylaxis (PEP) here.

Results from 2030 Targets Survey

For input in WHO’s post-2020 strategy, a February 2019 survey gathered feedback on potential global targets for 2030, grouped under the Triple Zero format. Special thanks to ILEP’s Technical Commission for designing the survey questions and Monty Mokhayer, ILEP Office, for implementing the survey and analysis.

Updated: 09/04/2019

International Task Force for Disease Eradication-Summary

The summary of the 2018 meeting of the  International Task Force for Disease Eradication, published in the Weekly Epidemiological Record. The meeting was held April 2018 at The Carter Center in Atlanta. Experts met to review the status of global elimination of leprosy (also known as Hansen’s disease), the availability of better diagnostic testing and treatment, reduction in social stigma, and research on the potential reservoir in armadillos.

Editorial: Evidence, opportunity, ethics, and the allure of zero leprosy by David G. Addiss

After a decade in which the long-term downward trend in the number of people diagnosed with leprosy (also known as Hansen’s disease) has stalled, there is new momentum toward a vision of zero leprosy. This has been facilitated by scientific advances, particularly related to post-exposure prophylaxis (PEP) for leprosy, and the coming together of the leprosy community in a new Global Partnership for Zero Leprosy.

Updated: 05/06/2018

GPZL Reports on Research Priorities

Reports on GPZL’s research priorities submitted to Leprosy Review, published in the September 2019 issue.

Letter: Update on the Global Partnership for Zero Leprosy (GPZL)

Letter to the Editor submitted to Leprosy Review, published in the September 2019 issue. This letter details the progress of the Global Partnership for Zero Leprosy and lays out the Partnership’s goals for the future.

The COVID-19 Crisis and Persons Affected by Leprosy Fact Sheet

Persons affected by leprosy have been especially impacted by the worst consequences of the COVID-19 pandemic. Governments, NGOs, civil society organizations, and organizations of persons affected by leprosy have enacted policies and programmes intended to support persons affected during this crisis, although there are still gaps. The Global Partnership for Zero Leprosy’s COVID-19 Emergency Advocacy Working Group and UN Special Rapporteur Alice Cruz gathered data from 100+ persons affected and partners, representing 24 countries, on available programmes and resources offering support to persons affected during this time. This fact sheet highlights some of the measures taken by governments and NGOs in the represented countries, and underscores the need for increased support.

Updated: 11/06/2020

ILEP Technical Commission 2020 Nomination Form

The ILEP Technical Commission and the ILEP Advisory Panel, which consists of women and men affected by leprosy, both come up for re-appointment in October.

The appointments will be made by the ILEP Members’ Assembly, and we are now inviting nominations. Find the terms of reference and nomination form here. Nominations are due by 21 September.

The Star January – June 2020

Read the January – June 2020  issue of The Star, radiating the light of truth on Hansen’s disease. The purpose of The Star is to: 1) Promote an educated public opinion of Hansen’s disease, 2) Serve as an advocate for those who have experienced or been impacted by Hansen’s disease, and 3) Foster self-empowerment of those who have experienced Hansen’s disease.

Reprinted with permission from The Star, Carville, Louisiana.

Persons Affected by Leprosy and the COVID-19 Global Health Crisis: Working Group 2 Consultative Calls Report

Emergency Response Working Group 2: Emergency Advocacy for Persons Affected, has conducted consultative calls with individual persons affected and persons affected organizations to gather information about the challenges persons affected are facing during the COVID-19 pandemic. This report details these challenges and concerns, covering access to health care, access to fundamental goods, access to government support, access to stable livelihoods, access to information about COVID-19, and the impact of intersecting vulnerabilities on the resiliency of persons affected.

In addition to the report, this document includes recommendations of specific actions NGO and government leaders can take to address the needs and challenges of persons affected during the COVID-19 pandemic. The final section of the report is an open letter on COVID-19 and leprosy addressed to UN Member States from UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, Alice Cruz.

Updated: 11/06/2020

Lettera aperta al Ministro degli Affari Esteri Luigi Di Maio, redatta da una rete informale e globale di persone affette dalla lebbra

Lettera aperta al Ministro degli Affari Esteri Luigi Di Maio, redatta da una rete informale e globale di persone affette dalla lebbra.

Updated: 04/06/2020

Open letter to Italian Foreign Minister Luigi Di Maio, organized by a global network of people affected by leprosy

Open letter to Italian Foreign Minister Luigi Di Maio, written by an informal, global network of people affected by leprosy, in response to his recent public comments.

Updated: 04/06/2020

Open letter from UN Special Rapporteur on COVID-19 and leprosy

An open letter on COVID-19 and leprosy to the UN Member States from UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, Alice Cruz. This letter details the impact of the COVID-19 pandemic on persons affected by Hansen’s disease and their family members, and provides governments with recommendations to mitigate its impact in the medium and long term.

Updated: 10/04/2020

Advice about leprosy and COVID-19

Advice about leprosy and COVID-19 from the WHO Global Leprosy Programme, ILEP, UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members Alice Cruz, and GPZL. Includes guidance on diagnosis and clinical management of leprosy patients, public health aspects of leprosy in the COVID-19 pandemic, and services for persons living with disabilities and/or psychosocial consequences of leprosy.

Updated: 10/04/2020

The Star Jul-Dec 2019

Read the July-December 2019  issue of The Star, radiating the light of truth on Hansen’s disease. The purpose of The Star is to: 1) Promote an educated public opinion of Hansen’s disease. 2.) Serve as advocate for those who have experienced or been impacted by Hansen’s disease. 3) Foster self-empowerment of those who have experienced Hansen’s disease.

Reprinted with permission from The Star, Carville, Louisiana.

WHO Global Leprosy Update, 2018

See the latest 2018 leprosy data and WHO’s strategies to reduce the disease burden in the Weekly Epidemiological Record, No. 35/36, Vol. 94 (30 August 2019).

Updated: 03/09/2019

The Star Jan-June 2019

Read the January-June 2019 issue of The Star, radiating the light of truth on Hansen’s disease. The purpose of The Star is to: 1) Promote an educated public opinion of Hansen’s disease. 2.) Serve as advocate for those who have experienced or been impacted by Hansen’s disease. 3) Foster self-empowerment of those who have experienced Hansen’s disease.

Reprinted with permission from The Star, Carville, Louisiana.

FactSheet: Special Rapporteur’s report to the Human Rights Council

A fact sheet about Leprosy, human rights issues associated with the disease, and the role of the the Special Rapporteur from Alice Cruz.

Updated: 01/06/2018

The Star 2018

Read the 2018 issue of The Star, radiating the light of truth on Hansen’s disease. The purpose of The Star is to: 1) Promote an educated public opinion of Hansen’s disease. 2.) Serve as advocate for those who have experienced or been impacted by Hansen’s disease. 3) Foster self-empowerment of those who have experienced Hansen’s disease.

Reprinted with permission from The Star, Carville, Louisiana.

WHO Global Leprosy Update, 2017

See the latest 2017 leprosy data and WHO’s strategies to reduce the disease burden in the Weekly Epidemiological Record, No. 35, Vol. 93 (31 August 2018).

Updated: 06/09/2018

WHO Guidelines for the Diagnosis, Treatment and Prevention of Leprosy

These Guidelines provide state-of-the-art knowledge and evidence on leprosy diagnosis, treatment and prevention based on a public health approach in endemic countries.

Updated: 23/08/2018

Special Rapporteur First Report

First report of Ms. Alice Cruz, the UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members. 

Updated: 19/06/2018

Infolep

Infolep is the one-stop source of information for leprosy and related issues, offering easy access to over 27,500 publications.

Updated: 31/05/2018

Meeting Notes: Governance, September 2020

Global Partnership for Zero Leprosy Leadership Team Meeting on Governance – September 2020 Teleconference

Updated: 14/09/2020

Meeting Notes: Governance, August 2020

Global Partnership for Zero Leprosy Leadership Team Meeting on Governance – August 2020 Teleconference

Meeting Notes, August 2020

Global Partnership for Zero Leprosy Leadership Team Meeting – August 2020 Teleconference

Meeting Notes, July 2020

Global Partnership for Zero Leprosy Leadership Team Meeting – July 2020 Teleconference

Meeting Notes, June 2020

Global Partnership for Zero Leprosy Leadership Team Meeting – June 2020 Teleconference

COVID-19 Response Meeting Notes, 21 May 2020

Global Partnership for Zero Leprosy Leadership Team COVID-19 Response Meeting – 21 May 2020 Teleconference

Meeting Notes, May 2020

Global Partnership for Zero Leprosy Leadership Team Meeting – May 2020 Teleconference

Meeting Notes, April 2020

Global Partnership for Zero Leprosy Leadership Team Meeting – April 2020 Teleconference

Meeting Notes, February 2020

Global Partnership for Zero Leprosy Leadership Team Meeting – February 2020 Teleconference

Meeting Notes, January 2020

Global Partnership for Zero Leprosy Leadership Team Meeting – January 2020 Teleconference

Meeting Notes, December 2019

Global Partnership for Zero Leprosy Leadership Team Meeting – December 2019 Teleconference

Meeting Notes, October 2019

Global Partnership for Zero Leprosy Leadership Team Meeting – October 2019 Teleconference

Meeting Notes, August 2019

Global Partnership for Zero Leprosy Leadership Team Meeting – August 2019 Teleconference

Meeting Notes, July 2019

Global Partnership for Zero Leprosy Leadership Team Meeting – July 2019 Teleconference

Meeting Notes, June 2019

Global Partnership for Zero Leprosy Leadership Team Meeting – June 2019 Teleconference

Meeting Notes, May 2019

Global Partnership for Zero Leprosy Leadership Team Meeting – May 2019 Teleconference

Global Partnership for Zero Leprosy Charter

The Charter for the Global Partnership for Zero Leprosy details policies and procedures for governance of the partnership.

Meeting Notes, March 2019

Global Partnership for Zero Leprosy Leadership Team Meeting – March 2019 Teleconference

A Framework for Engaged Research to Reach Zero Leprosy

The Global Partnership for Zero Leprosy’s initial framework to guide the creation of a research agenda. Click below to read the framework.

Updated: 12/03/2019

Meeting Notes, February 2019

Global Partnership for Zero Leprosy Leadership Team Meeting – February 2019 Teleconference

Meeting Notes, January 2019

Global Partnership for Zero Leprosy Leadership Team Meeting – January Teleconference

Operational Excellence Inaugural Steering Team Meeting

The objectives of this meeting were to familiarize the steering team members with the  plans of the Operational Excellence Working Group and their individual roles in it. (Amsterdam December 2018).

Meeting Notes, December 2018

Global Partnership for Zero Leprosy Leadership Team Meeting – December Teleconference

Meeting Notes, November 2018

Global Partnership for Zero Leprosy Leadership Team Meeting – November Teleconference

Operational Excellence Terms of Reference

The Operational Excellence Working Group will foster the use, scale-up, monitoring, and evaluation of best practices in national leprosy control programmes. Click on a button below to read the Terms of Reference.

Updated: 26/11/2018

Meeting Notes, October 2018

Global Partnership for Zero Leprosy Leadership Team Meeting – Strategy meeting in Brussels 11-12 October.

Meeting Notes, 30 August 2018

Global Partnership for Zero Leprosy Leadership Team Meeting – Teleconference

Meeting Notes: Operational Excellence Working Group

A coordinating committee outlined themes and criteria in a planning meeting for the Operational Excellence working group (Basel, Switzerland, August 2018).

Meeting Notes: Research Agenda Working Group

Facilitators and advisors met to plan next steps for the Research Agenda Working Group (Basel, Switzerland, August 2018).

Meeting Notes, 1 August 2018

Global Partnership for Zero Leprosy Leadership Team Meeting – Teleconference

Meeting Notes, July 2018

Global Partnership for Zero Leprosy Leadership Team Meeting – Teleconference

Meeting Notes, June 2018

Global Partnership for Zero Leprosy Leadership Team Meeting – Teleconference

Frequently Asked Questions

What is the Global Partnership for Zero Leprosy? What will the partnership do? How was the partnership formed?

Updated: 20/04/2018

Research Agenda Terms of Reference

The Leprosy Research Agenda Working Group will develop an aligned research agenda for current and potential future innovations in diagnostics, strategies, and interventions to contribute to zero leprosy.

Updated: 09/05/2018

Meeting Notes, March 2018

Global Partnership for Zero Leprosy Leadership Team Inaugural Meeting at Lepra in Colchester, UK.

Updated: 22/03/2018

Meeting Notes, April 2018

Global Partnership for Zero Leprosy Leadership Team Meeting – Teleconference.

Updated: 30/04/2018