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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

REPORT: Building Momentum in Morocco

4th regional symposium on leprosy and human rights paves way to Geneva in 2015.

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Naima Azzouzi (far right) and friends in Rabat

A recent symposium in Morocco on leprosy and human rights was an opportunity for Naima Azzouzi to speak publicly for the first time about the disease she was diagnosed with at the age of 9. Azzouzi is the president of an association of people affected by leprosy in Morocco formed this year to promote social integration, job opportunities and the alleviation of poverty.

“I want to thank the organizers for hosting this event. It is the first time we have been able to convey our feelings,” she told an international audience of 120 government officials, human rights experts, NGO representatives, journalists and people affected by leprosy in Rabat on October 28. “We want people to know we have fundamental human rights.”

Sponsored by the Nippon Foundation in cooperation with Morocco’s Ministry of Health, the symposium was the fourth in a series taking place in different regions of the world to disseminate Principles and Guidelines for the Elimination of Discrimination against Persons Affected by Leprosy and Their Family Members endorsed by a UN General Assembly resolution in 2010.

Although leprosy is completely curable, deep-rooted stigma and discrimination associated with the disease remain widespread. For those affected, this can mean living on the margins of society, where opportunities for education, employment and access to public services are severely curtailed.

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Around 120 people attended the symposium.

“Even though you may be medically cured, you still have the disease as long as there is stigma and discrimination,” Alem Galeta, a board member of the Ethiopian National Association of People Affected by Leprosy (ENAPAL), told a session on Women and Leprosy. Describing the desperate circumstances she used to live in, Galeta said that joining ENAPAL had been a turning point in her life. “Change is possible. Women can change, because I have changed.”

Speaking at the opening of the symposium, Professor Abderrahmane Maaroufi, Morocco’s director of epidemiology and disease control, said that the rate of leprosy had been going down in his country, but that leprosy still remains a social disease affecting rural and poor populations. “This symposium is an opportunity to trigger new actions against stigma and discrimination,” he said.

INTERNATIONAL WORKING GROUP

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Professor Barbara Frey

Previous symposia have been held in Brazil, India and Ethiopia. Following the first symposium in Rio do Janeiro in 2012, an International Working Group was formed to develop plans of action to help governments implement the Principles and Guidelines, and to propose a mechanism to monitor their efforts.

Professor Barbara Frey, director of the University of Minnesota’s Center for Human Rights and a member of the working group, called the UN resolution “a landmark achievement.” She said the Principles and Guidelines have their roots in the UN Charter and “confirm and build upon the core international guarantee of non-discrimination, which is so deeply embedded in international human rights law.”

While the Principles and Guidelines are initially aimed at states, she said, there are other important actors with a role to play, especially people affected by leprosy. “Useful alliances need to be forged. We need to work together.”

The day-long symposium included a session on leprosy heritage. Speakers from India, Brazil and Japan

stressed the importance of not forgetting what generations of persons affected by leprosy have endured. Dr. P.K. Gopal, president of IDEA India, suggested that preserving history can serve as a guideline for future generations on the behavior to avoid in dealing with people with a disease such as leprosy.

The fifth and final symposium is scheduled for Geneva in June 2015, when the International Working Group will issue its recommendations.