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Dr Paul Brand, who made his name in the field of reconstructive surgery for leprosy patients, and Dr Stanley Browne, who was concerned with public health, were both instrumental in setting up the All Africa Leprosy and Tuberculosis Rehabilitation Training Centre. In his capacity as chair of the World Committee on Leprosy Rehabilitation, Dr Brand oversaw a decision to promote training in rehabilitation. The greatest need for such training was in Africa. Dr Browne selected the most suitable site at Addis Ababa in Ethiopia and ALERT opened its doors for the first time in 1966.
Courses are still offered today at the 240-bed teaching hospital. In addition to specific courses related to rehabilitation in leprosy and prevention of disabilities, training is offered in combined leprosy, tuberculosis and HIV/AIDS control programmes.
ILEP Members have long supported training at ALERT. Currently Deutsche Lepra- und Tuberkulosehilfe co-ordinates ILEP support this training centre.
Bombay Leprosy Project is an NGO founded by Dr R Ganapati, an eminent Leprologist, who has transformed leprosy work from a closed institutionalized endeavour to a widespread community based work. The principles of Dr Ganapati's outstanding work have drawn several medical and para-medical workers into his fold to join hands with him in his crusade to work towards achieving leprosy elimination. We have been working relentlessly to help miserable victims of leprosy 'existing" from day to day with a bleak, almost hopeless future. The distinct commitment and true devotion of the team has set a mark in the history of leprosy. This has brought hope in the lives of thousands of individuals suffering from leprosy.
In 1962, Cardinal Léger founded this Endeavour, originally called Fame Pereo, to help people with leprosy. Cardinal Léger retired as Archbishop of Montreal to go to Cameroon, West Central Africa, and work with people affected by leprosy. Today, the main focuses are:
- Fighting major pandemics, such as tuberculosis, cholera, tetanus, malaria, polio and HIV/AIDS;
- Health promotion;
- Training health-care workers in prevention work; and
- Continuing the fight against leprosy, primarily in India and Haiti.
Center for Economic and Social Rights (CESR)
This American organisation promotes the universal right of every human being to health and a healthy environment, education, food, housing, work and adequate standard of living. Since 1993, when it was established, the CESR has been contributing towards more and more people attaining rights outlined in the Universal Declaration of Human Rights. They help civil society groups connect with international institutions to help ensure that states are accountable and introduce policy changes that observe human rights to social and economic wellbeing. It has begun to produce fact sheets on countries, which show, analyse and interpret certain human rights and development indicators.
Link: http://www.cesr.org/
Culion
Culion was established on Culion in the Palawan Group of Islands on 22nd August 1904. Then there were around 3,500 - 4,000 cases of leprosy in The Philippines and it was the practice to isolate people affected by leprosy to avoid further infections. It became the largest leprosarium in the world. Scientists were attracted there to conduct research. For example in 1921 physicians carried out clinical trials into early anti-leprosy medicines, particularly Chaulmoogra oil. Today there is also an on-site museum, open since 1997, including rare books about leprosy, journals, references, apparatus and patient records.
Founded in 1944, the Damien-Dutton Society for Leprosy Aid, Inc, is a registered non-profit organisation dedicated to freeing the world of leprosy. It was named after Father Damien, the priest, who cared for people with leprosy on the island of Molokai, Hawaii, and Joseph Dutton, who assisted him. The society raises funds for medical care, research, social and physical rehabilitation and education.
The Society presents the highest award for service to anti-leprosy work: the
Damien-Dutton Award. Mother Theresa, John F. Kennedy, Dr Paul Brand, who pioneered reconstructive surgery for people with leprosy, and Professor Michel Lechat, respected leprologist, are all previous recipients.
ILEP Member Association American Leprosy Missions has received this award. Individuals from ILEP Members who have been presented with the award include Dr Yo Yuasa, formerly Executive and Medical Director of the Sasakawa Memorial Health Foundation and Dr Ruth Pfau, who has worked tirelessly in Pakistan for the Deutsche Lepra- und Tuberkulosehilfe.
enable
This UN website focuses on the rights and dignity of persons with disabilities and is the official website of the Secretariat for the Convention on the Rights of Persons with Disabilities. It contains information on this landmark Convention. There is also much information about disability, including a full definition, statistics and the impact of disability on health, education, families and young people and those living in rural areas.
FAHAN (Foundation for Assistance to Hansenites)
FAHAN is based in the Philippines and works to support persons affected by leprosy and persons living with HIV /AIDS to integrate in the community and live in freedom and dignity.
FAHAN’s activities include: providing support to newly-diagnosed persons affected by leprosy to attend regular treatment and be involved in organised self-care groups; providing educational support for children of persons affected by leprosy; facilitating community awareness raising about leprosy in order to increase case-detection; and providing livelihoods and skills training opportunities.
This project was initiated by the International Leprosy Association and funded by the Nippon Foundation. (See separate links).
A team is assembling a database of archives on leprosy from around the world and making them available to researchers online. The web site has bibliographies of key people who have made major contributions to anti-leprosy work. The collection includes private collections of those who have worked in the field as well as those of people who have been affected by leprosy. In addition, there is a picture gallery, a bulletin board and interactive maps. Time lines for the countries around the world are being added, listing key events of historical interest.
Formerly known as the Indian Leprosy Foundation, this non-governmental organisation, renamed itself the Indian Development Foundation on 1st April 2005. This reflected the integration of leprosy services into the general health system by the Government of India.
It exists to support health, education and development in India. Its main focus is leprosy. Today, however, it is also carries out activities relating to other diseases such as tuberculosis, HIV/AIDS, cancer and blindness.
The Instituto Lauro de Souza is in Bauru Brazil. It began life in 1933 as an asylum for people with leprosy from the State and region of São Paulo. This web site is in Portuguese*. It has information on leprosy about research, books and courses. It also documents its museum about the history of leprosy and health policy in this region of Brazil.
*Sites in Spanish and English are under construction.
Established in 1994, IDEA is a support network for people affected by leprosy. Today there are over 30,000 members around the world. The majority of its leadership roles are held by individuals who have personally faced the challenges of leprosy. IDEA’s primary aim is to end the effects of discrimination, isolation and stigma people may feel, because they are, or have been, leprosy patients, and to restore their confidence, dignity and self-respect.
In 2000, the Associazione Italiana Amici di Raoul Follereau (see separate link under Members) awarded IDEA the Raoul Follereau Prize for the positive changes it has brought to the lives of so many people affected by leprosy. On 11th March 2003 IDEA launched its Global Campaign to Eliminate Stigma associated with leprosy. More recently it has supported the appeal of the Nippon Foundation to the United Nations Commission on Human Rights to take up as an agenda item the elimination of stigma and discrimination of people affected by leprosy.
A number of ILEP Members have contributed to some of IDEA’s activities.
International Disability and Development Consortium (IDDC)
This is a consortium of international NGOs who support disability and development initiatives and who work in partnership with disabled persons, their organisations and local communities. It focuses on disability in development programmes operating in less developed countries and also in those that, despite their level of economic development, do not offer access to basic rights and resources to disabled people. The IDDC has the following aims:
- to improve the policy and practice of its own member agencies;
- to promote sustainability;
- to eliminate discriminatory barriers; and
- to promote social justice.
ILEP Member, the Associazione Italiana Amici di Raoul Follereau was instrumental in setting up the IDDC.
The International Foundation of Dermatology (IFD) is an established arm of the International League of Dermatology Societies (ILDS). Its mission statement states that the chief objective of the organisation is “to improve dermatological care in underserved areas of the developing world“ and it also includes sexually transmitted diseases and leprosy. The intention is to provide better services for the disadvantaged in areas where skin or sexually transmitted diseases are both common and poorly managed through lack of training or resources, frequently both. All this is set against national backgrounds of health where the AIDS pandemic, a rising tide of chronic disease such as diabetes as well as poverty permeate all health care initiatives and also where endemic disease such as onchocerciasis, or lymphatic filariasis are common and may present with signs and symptoms in the skin.
The International Leprosy Association is a professional society for scientists, physicians and individuals and organisations in related areas working to understand and relieve the problems associated with leprosy. It was founded in 1931. Its primary aim is to provide up-to-date, medically and scientifically accurate information about this disease to all professionals who wish to know of such knowledge. Approximately every five years it helps to organise International Leprosy Congresses. The most recent Congress was held January 30th - 4th February 2008 in Hyderabad, India.
The web site of the International Leprosy Association is a key tool to encourage collaboration between people of all nationalities, disseminate information about leprosy and its control.
The International Journal of Leprosy and Other Mycobacterial Diseases was an official organ of the International Leprosy Association. For 73 years, between 1933 and 2005, it published findings of research projects, articles, editorials, correspondence, news, abstracts and reviews on leprosy. Today a similar role is carried out by Leprosy Review (see link), which is published by ILEP Member, LEPRA, the British Leprosy Relief Association.
Some of the last issues of the International Journal of Leprosy can be downloaded from the International Leprosy Association’s web site.
ILEP and the ILA collaborate and share expertise on a regular basis.
This journal is published quarterly in French by the Association des Léprologues de Langue Française, the French professional organisation for those with an interest in leprosy. It publishes articles on all aspects of leprosy, including epidemiology, training, notes, commentary, field programme experience and anecdotes. In addition, there are now regular contributions about Buruli ulcer. Often historical articles add an interesting insight into the past.
ILEP Member, the Association Française Raoul Follereau, covers the costs associated with the editing, printing and distribution of Le Bulletin de l’ALLF.
In the spring of 2006 Leonard Wood Memorial announced plans to affiliate with ILEP Member, the American Leprosy Missions.
It has managed a non-profit research centre for leprosy and other biomedical research on the island of Cebu in the Philippines since 1928. It provides training and treatment at the Cebu Skin Clinic. Leonard Wood Memorial is also involved in the American Leprosy Missions/Infectious Disease Research Institute research project to discover a vaccine for both leprosy and tuberculosis.
According to its Articles of Incorporation, the Leonard Wood Memorial will "leave no scientific step untaken that holds any promise of finding the ultimate solution of Hansen's disease (leprosy)."
The archives on leprosy, held at Bergen in Norway, one of the countries in Europe where leprosy was slowest to be wiped out, document the breakthrough of scientific understanding about leprosy. They also describe leprosy around the world, through documents, inventories, pictures and studies.
On 28th June 2001, the Lepraarkiva were elected to the UNESCO Memory of the World.
Leprosy Mailing List (LML)
Dr Salvatore Noto started the Leprosy Mailing List to enable people to be able to share and divulge information remotely by e-mail about leprosy.
The key objectives of the LML are to:
- create a forum for discussion of the main issues of leprosy and leprosy programmes and control activities;
- share information about the management of leprosy control activities and programmes and the socio-cultural aspects of leprosy and the rehabilitation of patients with disabilities; and
- offer a distance learning tool in leprosy for health professionals.
There is no charge for joining the LML. If you wish to receive the Leprosy Mailing List please write to Dr Salvatore Noto:
Dr Salvatore Noto
Padiglione Dermatologia sociale
Az. Ospedaliera Universitaria S. Martino
Largo R. Benzi, 10
16132 Genoa
Italy
Tel: +39 010 555 27 83
Tel: +39 010 555 23 70
Fax: +39 010 555 66 41
Skype: salvatore_noto
E-mail: salvatore.noto@hsanmartino.it
Archives of the Leprosy Mailing List
Please visit: http://www.aifo.it/english/resources/online/lml-archives/index.htm
Leprosy Review is the leading medical journal specifically about leprosy. The articles it publishes are intended to contribute to a better understanding of this disease. There are articles on research and articles which are of direct benefit to the control of leprosy under field conditions. In addition, it publishes interpretations of what is being done in other disciplines, particularly for field workers.
It is edited by Dr Diana Lockwood, a well-respected leprologists and scientist, who is a member of the ILEP Technical Commission.
An ILEP Member, the British Leprosy Relief Association, publishes this journal quarterly - in March, June, September and December.
The National Hansen’s Disease Programs (NHDP) is a division of the Bureau of Primary Health Care in the United States. It provides inpatient and outpatient care, and other services, at its clinic in Baton Rouge for people affected by Hansen’s Disease. The NHDP also co-ordinate outpatient care for patients in other states of the country and in Puerto Rico.
The NDHP conduct extensive research programmes examining different aspects of Hansen’s Disease. Training is provided for both health workers from the US and other countries. A range of training materials, some on digital media, are listed on the NHDPs’ website. There are also bibliographical listings of published articles on leprosy, information about leprosy and clinical care.
Neglected Tropical Diseases Journal
The Neglected Tropical Diseases Journal is the first open-access journal devoted to the world’s most neglected tropical diseases (NTDs). It seeks to publish research by scientists in countries where the chronic poverty-promoting NTDs, such as leprosy and other diseases, are endemic. Its objectives are to:
- provide a forum for NTD scientists and researchers, health practitioners, control experts and advocates to publish their findings in an open-access format;
- promote and profile the effort of scientists, health practitioners and public-health experts from endemic countries, and build science and health capacity in those countries; and
- highlight the global public health importance of the NTDs and advocate for the poor who have these diseases in endemic countries.
A non-profit organisation, the Public Library of Science publishes this journal on-line.
The Nepal Leprosy Trust is a UK-based Christian agency that provides services to people affected by leprosy in the Kingdom of Nepal.
The Nepal Leprosy Trust has initiated a number of pioneering projects in the fields of self-care training, community-based empowerment and rehabilitation, and community awareness. It supports the continual training of our staff and provide sponsorships for specialist training, such as for doctors.
The Novartis Foundation for Sustainable Development promotes sustainable development by bringing together different partners from all the actors in society, including the public sector, to develop joint contributions to solve health and poverty problems. It is sponsored by the pharmaceutical company Novartis and draws on its scientific knowledge to inform its decisions.
It has developed programmes to eliminate leprosy in several countries around the world. Since 2002, in co-operation with the World Health Organization, it has provided multi-drug therapy (MDT) free to leprosy patients around the world. In November 2005, the agreement was extended to allow leprosy patients to benefit from free drugs until the end of 2010. During the 17th International Leprosy Congress, 30th January - 4th February 2008, the Novartis Foundation for Sustainable Development further pledged to supply MDT beyond 2010 for as long as required.
St Francis Leprosy Guild's purpose is to help leprosy sufferers throughout the world. It is a registered charity raising funds mainly from donations and legacies, and distributing to leprosy centres in the third world.
The Schieffelin Institute of Health - Research & Leprosy Centre, Karigiri, more commonly referred to as "Karigiri Hospital" is an established medical treatment, research and training institute in the field of leprosy. It is recognized by many national and international agencies, including various Ministries and Agencies of the Governments of the State of Tamil Nadu and India, and the World Health Organization. It offers multi-disciplinary services addressing the problems of people affected by the disease including rehabilitation and person/community empowerment.
Support for People with Hansen’s Disease
Nicole Holmes created this support network in 2001 as a resource for individuals affected by leprosy. Its website is a key forum through which people can share their experiences and challenges, particularly stigmatisation, posed by this disease. Whether newly diagnosed or recovered from leprosy, visitors to the website can find understanding and empathy.
The Nippon Foundation was established in 1962 by Ryoichi Sasakawa. It funds many public health and welfare programmes, preferring to support projects whose effects are sustainable.
Since 1975 it has been helping people affected by leprosy, channelling its efforts both through the World Health Organization and ILEP. For a five-year period it concentrated on delivering multi-drug therapy free to leprosy patients. At the moment, the Foundation is increasingly focussing attention on the human rights of people affected by leprosy. In 2006 it launched the first of a series of Global Appeals to End Stigma and Discrimination Against People Affected by Leprosy on or around World Leprosy Day each year.
The United Nations officially came into existence 24th October 1945. Its Charter states that its purposes are to:
- maintain international peace and security;
- develop friendly relations among nations;
- co-operate in solving international economic, social, cultural and humanitarian problems;
- co-operate in promoting respect for human rights and fundamental freedoms; and
- be a centre for harmonzing the actions of nations in attaining the above goals.
The following is a portal to the websites of the United Nations, its funds and programmes and specialised agencies. It also includes links to key projects and initiatives, and to various joint programmes of the UN system: http://www.unsystem.org/
The World Health Organization (WHO) is the specialised agency of the United Nations for health. It was established on 7th April 1948. WHO’s Constitution states that its mission “is the attainment by all peoples of the highest possible level of health”.
The WHO co-ordinates programmes to combat diseases, particularly infectious diseases, and co-ordinates international efforts to monitor disease outbreaks.
ILEP collaborates with the WHO, particularly over policy and issues related to leprosy and impairment.
The WHO has several pages dedicated to leprosy, which can be found at: http://www.who.int/lep/
Information is also published occasionally in the Weekly Epidemiological Record. For issues visit: http://www.who.int/wer/
World Health Organization Regional Office for Africa: http://www.afro.who.int/leprosy/index.html
World Health Organization Regional Office for the Americas (Pan-American Health Organization): http://www.paho.org/english/ad/dpc/cd/leprosy.htm
World Health Organization Regional Office for Eastern Mediterranean: http://www.emro.who.int/index.asp
http://www.paho.org/english/ad/dpc/cd/leprosy.htm
World Health Organization Regional Office for Europe: http://www.euro.who.int/healthtopics
World Health Organization Regional Office for South-East Asia: http://www.searo.who.int/en/Section10/Section20.htm
World Health Organization Regional Office for the Western Pacific: http://www.wpro.who.int/health_topics/leprosy/