Reports & Guidance

7 April 2025 · Global Partnership for Zero Leprosy

The Patient’s Charter for Leprosy Care: Patient Rights and Responsibilities

A vital document designed to empower individuals affected by leprosy by clearly outlining their rights and responsibilities within the healthcare system. It ensures that care is delivered with transparency, accountability, and respect, fostering an environment where patients receive the dignity and quality treatment they deserve.

The Patient’s Charter for Leprosy Care: Patient Rights and Responsibilities

The Patient’s Charter for Leprosy Care is a vital document designed to empower individuals affected by leprosy by clearly outlining their rights and responsibilities within the healthcare system. It ensures that care is delivered with transparency, accountability, and respect, fostering an environment where patients receive the dignity and quality treatment they deserve.

This Charter provides a framework for equitable access to high-quality healthcare, enabling informed decision-making and active participation in treatment and recovery. It serves as a guide for patients to navigate the healthcare system while also emphasizing their role in maintaining their health and well-being.

At its core, this document establishes a foundation for collaboration between patients and healthcare providers, built on mutual respect, trust, and shared responsibility. By recognizing both patient rights and responsibilities, the Charter promotes fairness and ensures that healthcare remains person-centered.

The rights outlined in this Charter affirm every patient’s access to quality care, respectful treatment, and clear medical information. Patients should be well-informed about their condition, treatment options, and available support. At the same time, the Charter highlights patient responsibilities, such as open communication, adherence to medical advice, and respect for healthcare providers—contributions essential to the success of treatment.

Ultimately, the Patient’s Charter for Leprosy Care aims to create a healthcare experience that is respectful, safe, and effective. By fostering trust, accountability, and empathy, it encourages a strong partnership between patients and healthcare providers, ensuring the best possible health outcomes.

Factsheet on Leprosy Reactions: Classify and manage reactions before, during, and after leprosy treatment

Leprosy reactions involve a flare-up of inflammation in the body caused by complex immunological processes, linked to the remains of dead bacilli in the tissues. Reactions may occur before, during, or after treatment. They do not indicate a failure to control the leprosy infection. Normal antibiotic treatment is not affected, and completed treatment does not need to be restarted if a reaction occurs. Reactions occur in many people with leprosy, perhaps up to 50% of cases in some places, especially in patients with the multibacillary disease.  Reactions may occur with obvious symptoms, such as red, swollen skin lesions, pain, muscle weakness, or sensory loss, but may also start insidiously, without any clear symptoms.

UN Special Rapporteur Factsheet: Why Inclusive Participation Matters

This factsheet distills the key messages of the UN Special Rapporteur’s October 2022 report, “Multiple disabilities and fluid self-identification: disability rights of persons affected by leprosy and their family members and how they challenge national legal frameworks.”

Global leprosy (Hansen disease) update, 2021: moving towards interruption of transmission

WHO collects statistics on leprosy annually from countries to assess the situation and to publish an annual global leprosy update. In 2021, 143 countries provided statistics, as compared with 127 in 2020.

Factsheet on SDR-PEP: The latest research on single-dose rifampicin post-exposure prophylaxis

Single-dose rifampicin post-exposure prophylaxis (SDR-PEP) is a preventive treatment for leprosy that can be used to reduce the risk of developing leprosy among contacts of leprosy patients and thus, indirectly, reduce transmission of leprosy bacilli. Large-scale, international studies show that SDR-PEP is safe and contributes to reducing leprosy incidence and preventing secondary disabilities. It has been tested in more than 11 countries, and more than 175,000 people have received treatment in research settings. The World Health Organization (WHO) advises the use of SDR-PEP in the Roadmap for Neglected Tropical Diseases 2021 – 2030, the Global Leprosy Strategy, and the WHO Guidelines for the Diagnosis, Treatment, and Prevention of Leprosy. The Global Partnership for Zero Leprosy also recommends SDR-PEP for routine leprosy control services.

UN Special Rapporteur Factsheet: What people create, people can change

This factsheet distills the key messages and recommendations of the UN Special Rapporteur’s June 2022 report to the UN Human Rights Council. The report calls for a people-centered approach that addresses structural violence and unequal power relations.

Factsheet: Discrimination in law against persons affected by leprosy and their family members

More than 100 laws discriminate against persons affected by leprosy worldwide. This factsheet distills the key messages from the UN Special Rapporteur Alice Cru’s report to the UN General Assembly.

An unfinished business: discrimination in law against persons affected by leprosy and their family members

In her report to the UN General Assembly, the Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, Alice Cruz, identifies more than 100 laws that discriminate against persons affected by leprosy worldwide. She examines the roots of these laws in biomedical misconceptions about the disease and their provisions and consequences, which are reflected in the persisting dehumanization of persons affected by leprosy and their family members.

Safety in administering medicines for neglected tropical diseases

This WHO manual provides practical tools to help national programmes for neglected tropical diseases (NTDs) plan, prepare, and monitor the safe administration of medicines for the treatment of these diseases.

Factsheet: Disproportionate impact of the COVID- 19 pandemic on persons affected by leprosy

In her report to the 47th Session of the Human Rights Council, the Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, Alice Cruz, addresses the disproportionate impact of the coronavirus disease (COVID-19) pandemic on persons affected by leprosy and their family members, exploring the underlying causes and offering constructive recommendations for an inclusive recovery. This factsheet summarizes the key points from the report.

Disproportionate impact of the coronavirus disease (COVID- 19) pandemic on persons affected by leprosy and their family members: root causes, consequences and the way to recovery

In this report to the 47th Session of the Human Rights Council, the Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, Alice Cruz, addresses the disproportionate impact of the coronavirus disease (COVID-19) pandemic on persons affected by leprosy and their family members, exploring the underlying causes and offering constructive recommendations for an inclusive recovery.

Global Leprosy (Hansen’s disease) Strategy 2021 – 2030

The World Health Organization’s Global Leprosy Strategy 2021 – 2030, “Toward Zero Leprosy,” outlines global targets for 2030 and includes 4 strategic pillars.

Leprosy/Hansen Disease: Management of reactions and prevention of disabilities

The WHO Global Leprosy Programme has re-released a report with additional information on the use of thalidomide for the treatment of ENL reactions. The guidance supports the use of thalidomide as a ‘steroid-sparing’ medication for ENL.

Chronic Care for Neglected Infectious Diseases

A new publication from the Pan American Health Organization (PAHO) focuses on DMDI (disease management, disability and inclusion) for four NTDs: leprosy, lymphatic filariasis, trachoma, and Chagas disease.

Nitrosamine concerns for rifapentine and rifampicin: Update and FAQs

Update and FAQs from the World Health Organization on recent concerns for rifapentine and rifampicin

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 COVID-19 Emergency Response Working Group 2 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.

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.

Technical guidance on Reaction Management and Disability Prevention

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

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.

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?