ALO Society recently held a coordination meeting with the leaders of the eight federations in Dhaka to review ongoing initiatives, discuss future priorities, and better understand the support needed to strengthen the organizations and their members.

During the meeting, federation leaders shared that since 2023, ALO Society has been providing various forms of organizational and technical support to all eight federations in Dhaka. These initiatives have helped the federations strengthen their self-help groups, increase membership, and improve their overall organizational capacity.

The leaders also highlighted the positive impact of the Education Support Program implemented from 2024 to 2026. Through this initiative, many students from leprosy-affected and disadvantaged families received educational assistance, enabling them to continue their studies and pursue better opportunities. In addition to educational support, ALO Society has continuously provided technical guidance, capacity-building activities, and organizational development support.

During the discussion, ALO Society Executive Committee Member Nurjhst Jahan inquired about the progress of the federations, the challenges they are currently facing, and new initiatives they are planning to undertake in their respective areas.

The meeting was attended by Klinton Malakar, Program Manager of ALO Society, and Arpon Andry, Assistant Accountant. Mr. Arpon Andry was formally introduced to the federation leaders and will work closely with them to improve financial reporting, documentation, and regular progress tracking.

Mr. Klinton Malakar also introduced the newly approved project supported by The Leprosy Mission Great Britain (TLMGB). He discussed the project’s objectives, implementation priorities, and sought recommendations from the federation leaders regarding local needs and effective implementation strategies. The discussion emphasized ensuring that project activities respond to the actual needs of the communities.

As part of the preparation for the new project, ALO Society also discussed the importance of conducting internal audits and strengthening financial accountability to ensure transparent and effective project implementation.

The meeting concluded with a shared commitment to maintaining close collaboration, strengthening federation capacity, and improving the quality of services provided to persons affected by leprosy and other disadvantaged communities.

On Sunday morning at 8.30 AM, the rally came out in front of the 250-bed General hospital and a discussion meeting was held after the standing rally. The program was organized by the Christian Service Society (CSS) and the Leprosy Mission International-Bangladesh at the Civil Surgeon’s office premises.

Some of the winners of the essay competition on leprosy eradication by 2030 were awarded at the event.
The program was conducted by Director of Health and Education, Khulna, Md. Abul Kalam Azad. Chief guest Dr. Rashed said, `We have eight more years, we need to come together and start working hard now”.

Other speakers also spoke on the occasion. The speakers said that leprosy patients were not called before. They were kept apart. But leprosy can be cured by treatment. All leprosy patients are well treated. With everyone’s cooperation, the country will be declared leprosy free by 2030.

The event was attended by Klinton Malakar, Project Officer, ALO Society on Behalf of Leprosy mission-International-Bangladesh and representatives of various NGOs including journalists and others were present.

This date was chosen by French humanitarian, Raoul Follereau as a tribute to the life of Mahatma Gandhi, who did much work with persons affected by leprosy and died at the end of January in 1948.

What is World Leprosy Day?
World Leprosy Day takes place on the last Sunday of January each year. It is organised by organisations of people affected by leprosy and leprosy-focused NGOs, including The Leprosy Mission, and is an opportunity to lift up the voices of people affected by leprosy throughout the world.

What is the theme for World Leprosy Day 2023?
The theme for World Leprosy Day 2023 is ‘Act Now: End Leprosy’. We will share more details of the theme in due course. On the day you will be able to follow online with #WorldLeprosyDay

Why do we celebrate World Leprosy Day?
We celebrate World Leprosy Day to raise awareness of a disease that many people think does not exist anymore.

Each year there are 200,000 people diagnosed with leprosy and there are millions who are living with the damaging consequences of delayed leprosy treatment.

World Leprosy Day is an opportunity to celebrate the lives of those affected, raise awareness of the signs and symptoms of the disease, and tackle the stigma that too often surrounds leprosy. It is also an opportunity to raise money so that we can be the generation that ends leprosy transmission.

How is World Leprosy Day celebrated?
The day is marked in both countries with and without leprosy. In countries where leprosy is either non-existent or very rare, World Leprosy Day is marked by churches, NGOs, and leprosy champions who aim to raise awareness of the fact that leprosy still exists and it is still ruining lives.

In countries where leprosy still exists, communities and people affected by leprosy come together to raise awareness and host events that are aimed at reducing leprosy stigma and raising awareness of the disease. In many countries there is also good engagement from governments, who mark the day through ministers and events.

What can you share this World Leprosy Day?
A digital toolkit has been created for anyone who wants to take part in the World Leprosy Day 2023 campaign.

If you want to raise awareness with us online this World Leprosy Day, here are some key facts and details that you can share:

Leprosy is curable with a combination of antibiotics known as Multi Drug Therapy (MDT). This treatment is available for free across the world. If leprosy is not treated, it can lead to serious complications.
Leprosy is at least 4,000 years old, making it one of the oldest diseases known to humanity.
Leprosy still exists! Around 200,000 people are diagnosed with leprosy each year and many millions are living with leprosy-related disabilities, particularly across Asia, Africa, and South America.
.Source: https://www.leprosymission.org/

Speakers came up with this statement during a day-long event jointly organised by the National Leprosy Programme (NLP) and partner NGOs, said a media statement issued on Friday.

Sasakawa Health Foundation (SHF), a partner organisation of Nippon Foundation, was also in collaboration to host the event.

Health Secretary Md Anwar Hossain Howlader attended the event as the chief guest.

“The prime minister’s declaration of making a leprosy-free country by 2030 is very imperative and to this end, anti-leprosy programmes should be taken largely in the country,” he said.

Leprosy TB Coordination Committee (LTCC) Convenor Dr Aung J Kay said that foreign funding for leprosy programme is decreasing day by day. Hence, initiative from the government is a must for taking up the anti-leprosy programme.

Programme manager (Leprosy) of DGHS Dr Mohammed Eunus Ali said that required financial allocation is needed for making the anti-leprosy programme successful.

Speakers in their discussion said that the impact of leprosy is significant. People with leprosy and their families experience income loss and unemployment because of visible impairments, leprosy-related stigma and high cost of leprosy.

“Leprosy patients encounter social stigma that drives them to conceal their disease from neighbors and even family members, and are faced with the burdens of treatment costs and lost wages while still needing to feed their families”, they said.

Leprosy, when left untreated, often leads to visible impairments of the hands, feet, eyes and face. These impairments, in combination with leprosy-related stigma, limit daily activities and people’s physical ability to perform work-related tasks, they observed.

“Therefore, many people affected with leprosy experience difficulty in finding employment, reduction in earnings and fewer opportunities for education. Thus, leprosy may have a large economic impact on people affected by leprosy and their families”.

Hence, it is needed to chalk out anti-leprosy programmes for making leprosy free country by 2030. Adequate financial allocation in national budget is important for making the programme successful, they said.

They remarked this while addressing a Stakeholders’ meeting among the government, NGOs and organizations of leprosy affected people at Officers’ Club in the capital on Thursday.

Dr Takahiro Nanri, Executive Director of SHF; Nilufer Nazneen, Additional Secretary, Health Services Division, Ministry of Health; Prof. MD Shamiul Islam, Director (Admin) of DGHS; among others, spoke on the occasion.

To engage local government in leprosy-related activities
To distribute assistance aid to leprosy-affected individuals.
Distributing information about leprosy to the audience leprosy community, civil society and among guests specially the state minister.

The organizer of the event:

The event was jointly organized by National Leprosy Program(NLP), SHALOM Church of Bangladesh , and The Leprosy Mission International Bangladesh (TLMI-B)

The program is supported by:

Guests of the program

• Mr. Farhad Hossain MP, Honorable Minister of State, Ministry of Public Administration
• Professor Dr. Shakil Ahmed , Director MBDC, DGHS
• Dr.MD Zowaherul Anam Siddiqui , Civil Surgeon, Meherpur
• Dr. Mohammed Monsur Alam Khan, Deputy Commissioner & District Magistrate, Meherpur)
• Mr.MD. Rafiul Alam (Superintendent of Police,Meherpur)

Participants of the Program
On the occasion, there were “people affected by leprosy”, the director of MBDC Prof. Dr. Shakil Ahmed, the Deputy program manager of the national leprosy program, the Civil Surgeon of Meherpur, the District Commissioner of Meherpur, Superintendent of Police of Meherpur, Executive director of SAHLOM, and Project support coordinator of TLMIB and executive staff working on Leprosy issues in the Meherpur District, among others. Participants in the event will be journalists covering the leprosy issue, the Honorable State Minister of Bangladesh’s Public Administration Department, HE FARHAD Hossain MP.
There was a total of Male (65) and Females (135)
The event began at 10:30 a.m.The program began with welcoming all guests with snacks and the chief guest with flowers, followed by a recitation of the Quran by Moulana Abdul Aziz Ali of Alia Madrasha and a recitation of the Bible by Mr. Mritunjoy. Finally, Ronald Gomes, the director of Shalom, gave a speech on behalf of Shalom and TLMI-B, in which he described the role of SHALOM and TLIM-B, as well as the infrastructure and system they have to fight against leprosy and achieve the goal committed by the prime minister to eliminate leprosy from Bangladesh by 2030.

Dr. Tanzina, the deputy program director delivered a presentation on the leprosy situation in Meherpur district and whole Bangladesh. She also discussed the disease’s epidemiology and displayed slides illustrating leprosy symptoms among the audience and the leprosy community. After that a former leprosy patient named Shelfali mollik shared her life experience and how she dealt with life as a leprosy patient. After that, Jeraul shared his life narrative and described how he dealt with life as a leprosy patient. He even described how he recovered from leprosy and got hope for a normal in phase life, he described how kind society was after his recovery. Then, Mr. Rafiqual Alam, a journalist who has been actively working in the leprosy sector, presented his knowledge and recommended an increasing number of professionals in Meherpur to strengthen the screening procedure for leprosy case detection as mentioned early case detection of leprosy can prevent long-term disability. Chairman Mr.Abdul Karim then delivered his message on leprosy. Then, Advocate Shaheen, the head of the Awamileague in Meherpur, spoke as a political figure. The civil surgeon of Meherpur presented a speech in which he thanked TLMI-B and SAHOLM for organizing this occasion.
As part of the program, Award was given to the chief guest as recognition of their work toward leprosy-free Bangladesh, and it was distributed by Sondha Mondol and Jiptha Boiragee,
Also in the program,12 goats were distributed, 10 of which were given to leprosy-affected individuals with the personal contribution from Prof. Dr. Shakil Ahmed, the director MBDC. Along with a monetary incentive of 40,000 BDT, 2 goats were also given to a self-help group for group establishment and well-being. Two sewing machines were distributed to patients as a part of income-generating support. All this aid was distributed by an honorable state minister in the presence of all guests and audiences.
The program concluded with a speech from honorable state minister, in which he expressed his cooperation and dedication to achieving a leprosy-free, stigma-free, leprosy-disability-free community by 2030. He also expressed government’s concerns about Leprosy and is prepared to assist whenever necessary.

 
Photographs of the Event:

The award of the fourth annual NTD Innovation Prize was a highlight during the closing session of the NNN Conference. American Leprosy Missions, in partnership with Novartis, awarded the $40,000 Prize to Jiptha Boirajee of The Leprosy Mission Bangladesh, for a project that will scale up digitally-based care for leprosy complications across 20 districts in Bangladesh. The project will be implemented with ALO, the national organisation of persons affected by leprosy.

This video, produced by ALO, explains in more detail what the project will achieve and why. We congratulate Jiptha, and those who have worked with him, on this well-merited award. https://www.ntd-ngonetwork.org/

There was strong representation from the leprosy world. More than one-third of the attendees had connections with leprosy organisations, particularly from Nepal and India, including ILEP Member associations and people’s organisations such as IDEA Nepal. Six of the seven ILEP Advisory Panel members were active participants in the Conference and built a strong connection with the IDEA Nepal representatives.

Discriminatory law
An advocacy event, organized by IDEA Nepal and ILEP Members working in Nepal, was held the day before the Conference. The aim of the event was to raise political and judicial awareness of marriage legislation in Nepal that discriminates against persons affected by leprosy. The audience heard that the law contradicts government statements that leprosy is not to be feared, and it is not in keeping with Nepal’s commitments under the CRPD Convention. Speakers from the Supreme Court, Bar Association and National Human Rights Institution talked about the process for changing the law. There was optimism that this can be accomplished by mid-2023.

Leprosy-specific group meeting
130 participants – almost half the in-person delegates – joined the 3-hour leprosy-specific group meeting facilitated by Andie Tucker (GPZL) and Geoff Warne (ILEP). The first half of the meeting covered the challenges and opportunities around integration of leprosy with other NTDs. Break-out groups discussed examples of integration with Skin-NTDs and what had made this integration successful. The second half included presentations and Q&A on the implications for ILEP Members of the forthcoming WHO guidance for countries wishing to assert leprosy elimination (defined as interruption of transmission) and included data from four low-endemic countries demonstrating the application of the elimination framework.

ILEP Member delegates were also very engaged in the Skin NTDs cross-cutting group and the Disease Management Disability and Inclusion (DMDI) cross-cutting group, as well as in the many Conference workshops.

Conference opening plenary
The President of Nepal was the chief guest, thanks to tireless work by Shovakhar Kandel (TLM Nepal) during the weeks leading up to the Conference. Other key speakers during the event included Amar Timalsina (member of the ILEP Advisory Panel) who used the history of IDEA Nepal to demonstrate how people’s organisations have enabled people affected by leprosy to have a clear and powerful voice; and Wim van Brakel (NLR and ILEP Technical Commission) who gave examples of ILEP Member collaboration with government programmes, local universities, and other partners to continue to improve the tools available to combat leprosy. He also spoke about the holistic nature of ILEP’s work, working towards zero transmission, zero disability and zero discrimination, and how ILEP and its Member associations have sought to infuse this holistic approach into the NNN community as a whole.

Source : ilepfederation.org

28 January 2022 Chairman of ALO-Society Md. Kamal Uddin participated in a Talk Show about “Status of Leprosy affected Persons’’ on a popular satellite Ekushey TV. Where he talked about his life experience as a leprosy-affected person and his engagement with the service of leprosy-affected people. This talk show was participated by a government representative and a representative of Leprosy Mission International Bangladesh. Where they talk about world leprosy day and its significance.