Reflections on the 3rd Global Forum of OPLs

Thoughts from the people who were in the room

Reflections on the 3rd Global Forum of Organisations of Persons affected by Leprosy

In July 2025, the Sasakawa Health Foundation hosted the third Global Forum of Organisations of Persons Affected by Leprosy. This one, like the previous two, happened in the days before the International Leprosy Congress.

This Forum brought OPL leaders from across the world together in Bali for three days of meetings. Prior to the Forum, the OPL leaders had conducted needs assessments within their organisations. These assessments were presented on the first day of the Forum and the subsequent days were spent developing plans for growing organisational capacity and engaging with partners.

There are three outcome documents that have come out of the Forum:

A letter of commitment by the OPLs. Read it here >
A letter of recommendations to stakeholders. Read it here >
An action plan for capacity building of OPLs. Read it here >

Following the Global Forum, we spoke to the OPL leaders who were in the room to ask them two questions:

What was the most important thing to come out of the Forum for your organisation?
What is one thing you hope will change after the Forum?

What was the most important thing to come out of the Forum for your organisation?

As an affected person, I have the certainty that there will be no zero leprosy if we are not part of the design and implementation of Hansen's Disease/leprosy programmes and if our voice is not strong enough to be included in decision making. Our capacities in autonomy and other aspects related to advocacy must be valued.

Lucrecia Vásquez Acevedo, legal representative of Felehansen, Colombia

We have to develop a strong voice as an organisation and be prepared to run awareness raising campaigns so that other people can learn from what we have learnt from the Global Forum. What we did in Bali needs to be shown to people across our countries.

Kofi Nyarko, IDEA Ghana

I think the most significant come out of the Global Forum for me and our organisation was the opportunity to foster collaboration with other leaders and fellow innovators with leprosy experience.

At the Global Forum we can engage in meaningful group discussions about best practices in each organisation. We shared information related to the activities and challenges that each organisation faces.

So the point I take is that it is not only Timor-Leste that has difficulties, but almost all organisations founded by people affected by leprosy have the same difficulties. Therefore, in these discussion groups, each organisation is reminded to encourage themselves and work hard to fight against discrimination to ensure the rights of persons affected by leprosy.

Additionally, the outcome documents are very important. The letter of recommendation helps stakeholders to see what our priorities are. It might be hard for us to have a SWOT analysis of each organisation, but having our letter of commitment allows us to work together for the future of our organisations.

Luiza Gusma, leader of ATLETIL, Timor-Leste

The most important take home of IDEA Nigeria from the Global Forum is the exposure we had. That exposure led us to look inwards. Right there at the Global Forum, we made resolutions of the things we would come home and work on.

From when we returned from Bali to the time of this correspondence, IDEA Nigeria has recorded remarkable progress, more progress than it has witnessed in years past. We have reviewed our Constitution and it is currently going through the process of adoption by our leaders.

IDEA Nigeria for the first time has three technical staff and Red Aid Nigeria has graciously offered to train them on organisational leadership, advocacy and proposal development. We are also engaging with some organisations to see if they will be able to grant these staff members hands on internships.

Our social media pages are up and running and our website is underway, it should be ready before the end of August. We have also rebranded IDEA, it's logo and general outlook of the brand.

IDEA's operational office was in Minna, Niger State, but in recent times, IDEA's operations have mostly been in Abuja. We didn't have a space in Abuja and were operating from our homes. After the Global Forum, we were able to secure an operational space that was gratuitously offered to us, it is a shared space but we are glad to have a base. We hope to secure our own space and furnish in the course of time but in the mean time, IDEA has an operational base. All this came about as a result of looking inwards.

We have a bucket list of things on our itinerary that we hope to tick off e.g. restructuring our governance structure.

This has confirmed to us that there's more power within than we ever know, all we need is the courage to harness our inherent abilities.

Sedoo Toryem, IDEA Nigeria

At the Forum, I learned that although the challenges and issues faced by people affected by leprosy are not exactly the same in every country, many of them are quite similar. These include discrimination, loss of dignity, and denial of human rights. Therefore, all the countries agreed to form a oversight committee to work together toward solving these problems. We also had the opportunity to learn from the needs assessments presented by other countries.

U Soe Win, President of MAPAL, Myanmar

One of the personal benefits I gained from the Global Forum in Bali was the valuable opportunity to meet and interact directly with many fellow persons affected by leprosy from various countries. This forum offered a deeply meaningful experience for me, particularly in understanding the situations, challenges, and struggles faced by our friends in their respective countries. Through these interactions, my perspective broadened, and my sense of solidarity as part of the global community of persons affected grew even stronger.

Al Kadri, Chairman of PerMaTa Indonesia

The most important outcome of the 3rd Global Forum was that our collective deliberations and unified voices resulted in something concrete and lasting: the adoption of three foundational documents and the creation of a new structure for accountability.

Together, we the persons with lived experience of leprosy from different countries, drafted the Letter of Recommendations to stakeholders, setting out urgent demands on health care, laws, education, livelihoods, stigma reduction, and rights protection, the Letter of Commitment, pledging to strengthen our organisations through inclusivity, leadership development, and transparency and an Action Plan for capacity-building and sustainability giving us a practical roadmap for stronger governance, leadership, and partnerships. Most significantly, we established an Oversight Committee of persons affected by leprosy from all regions, empowered to monitor progress, demand accountability of some of the very important stakeholder groups, and issue regular reports.

For my organisation, this is historic. For the first time, persons affected by leprosy are not only making appeals but also putting in place mechanisms to ensure they are acted upon. It marks a shift from being passive recipients to active architects of change - able to hold governments, donors, and agencies accountable while building stronger, more sustainable organisations ourselves.

Jayashree Kunju, IDEA International

The Global Leprosy Forum to me was a powerful platform that gives voice to people affected by leprosy, empowering us to be seen, heard, and included. For us in Kenya, it opens doors to global partnerships, better policies, and stronger health systems. Most importantly, it brings us closer to a just society where no one is left behind because of disease or stigma.

Gilford Otieno, IDEA Kenya

The greatest takeaway for IDEA International was that it was an opportunity for us to meet in person, which is very rare. Our Board is composed of people with lived experience spread across the globe. We were able to connect and reaffirm our commitments for the organisation in the future. We were also able to meet with nine of our daughter organisations and their leaders. We were able to reaffirm our commitment to our philosophy and our mission.

Zoica Bakirtzief, Board Chair of IDEA International

As someone who has lived with leprosy, being at the 3rd Global Forum in Bali was a truly meaningful and powerful experience. Throughout my life, I have faced stigma, rejection, and silence. But in that space, surrounded by people like me from around the world, I felt something different. I felt respected. I felt heard. I felt equal.

The most significant part for both me and IDEA Nepal was that we were not just present to listen. We were there to lead. When we all came together to create and sign the Letter of Commitment and the Action Plan, I knew we were part of something greater. These were not just documents, they were a bold message to the world: we are no longer asking for charity. We are demanding dignity, inclusion, and justice.

It gave me immense hope to see people affected by leprosy standing up not as victims, but as leaders. And I felt proud to be one of them.

Dinesh Basnet, President of IDEA Nepal

The most important thing that came out of Global Forum is that the Recommendations for stakeholders. They must lead to holistic development for people affected by leprosy across the globe.

Suresh Dhondge, TLM India

The Global Forum of People Affected by Hansen’s disease, facilitated by the Sasakawa Health Foundation, has become, for me and I think for other people affected by Hansen’s disease, a place of belonging, a place we can truly call our own. I can say that it is the place where we feel free to express our most sincere thoughts and frustrations, it is the place beyond our organisations where we feel safe to dialogue as equals without fear of retaliation or judgment.

The Global Forum is not a decision-making space; it has neither that power nor that function. It is a place for the exchange of successful experiences among organisations of affected people, as well as a space for sharing knowledge.

Outside the "walls" of our organisations, the Global Forum is the most legitimate space for affected people that we have known for years. Despite being included in several aspects, such as being consulted by organisations and governments in decision-making, we do not feel like an integral part of these processes. The Global Forum gives us this feeling of belonging to a place. It gives us the guarantee of being heard and of dialogue with ILEP institutions and governments, calling these institutions to a reflective process on the impact of their actions, whether in the field of negative or positive actions of their activities.

The result achieved from a personal point of view is the dignified and respectful way in which this event is programmed and carried out, and the way of executing it, so that for a few moments or days, it makes us forget that we are human beings with countless limitations and problems in our daily lives as people affected by a stigmatising and progressively evolving disease in the field of physical disabilities.

From a broader point of view, I believe that the experience lived in this 3-day immersive process strengthens our work and encourages us to think about how to improve our actions for the benefit of those affected in general, how to strongly and positively impact the lives of these people.

Faustino Pinto, National Coordinator of MORHAN Brazil

What impressed me most about the third Global Forum was the speed with which some organisations have gained experience and the evolution of Organisations of People affected by Leprosy around the world. Today, I can say that certain organisations at international level have become experts in our work, and this has strengthened me a lot and given me the courage to give even more to achieve positive results.

Sandra Dongo, President of OPALCO, DR Congo

For me and for the ASCL/MTN, the most important aspect of the Global Forum in Bali was the highlighting of the voices of people directly affected by leprosy. The Forum provided a unique forum for dialogue, recognition and appreciation of our lived experience. It enabled a constructive exchange between organisations of people affected by leprosy, partner institutions, political decision-makers and donors. This type of platform strengthens the legitimacy of our demands and consolidates our role as key players in the fight against leprosy and other neglected tropical diseases (NTDs).

Papa Mamadou, the president of the Senegalese Association for the Fight against Leprosy and NTDs (ASCL/MTN)

For me it was the opportunity to learn from other organisations. Through their needs assessments and shared experiences, I gained a deeper understanding of their efforts, challenges, and successes. I also learned how they connect with the government, organisations, and donors to improve their work. That inspired me a lot. I realised that MAPAL also needs support to grow, and to be more inclusive and active. We need more funding, leadership development, and meaningful participation in decision-making processes. I also noticed that MAPAL needs more young leaders to help strengthen the organisation and continue its mission into the future.

Even though MAPAL was not selected for needs assessment and we couldn’t present ours, we still learned a lot from others. However, I was a bit sad that MAPAL’s vinyl was not shown at the Global Forum and ILC because MAPAL was not selected. I believe if it had been presented or displayed, more people would have known about MAPAL and our work. I hope that in the next Global Forum or ILC, we will try to get a chance to present about MAPAL. It is really needed for raising awareness and building connections.

We had a chance to share within our working group about Myanmar and the situation of MAPAL, and I realised that even though we come from different places, we face many similar barriers like stigma, discrimination, and lack of support. We actively participated in discussions about the Commitment Letter, Recommendation Letter, and Action Plan, which was a valuable experience in shaping collective goals. I met many inspiring people and organisations who are working with passion for persons affected by leprosy. This gave me new ideas, motivation, and hope for our work in Myanmar. After returning home, we shared the knowledge and discussions from the Forum with our MAPAL members to ensure they are also informed. I think this kind of sharing is important for members who could not attend.

Thandar Bo, MAPAL member and TLM Myanmar staff

What is one thing you hope will change after the Forum?

One thing we hope will change and we have already started working on is that IDEA Nigeria will no longer be an organisation tied to the aprons of other organisations. Our goal is to be an independent organisation of international repute that will run it's operations based on best practices and standard operating procedures. This should translate to successful grants and executions that will transform the lives of persons with lived experiences and work towards a world with Zero Leprosy.

Sedoo Toryem, IDEA Nigeria

As a result of the Forum, I hope to see a stronger and more concrete commitment from governments and technical and financial partners to the systematic integration of people affected by leprosy and NTDs into policies and programmes. This includes greater social inclusion, actively combating stigma, supporting economic empowerment and fully recognising our organisations as strategic partners. I also expect rigorous follow-ups to the commitments made in Bali, with clear accountability mechanisms. It's time to move from words to actions.

Papa Mamadou, the president of the Senegalese Association for the Fight against Leprosy and NTDs (ASCL/MTN)

Following this Global Forum, I hope stakeholders’ engagement can bring actionable results based on the insights shared during the sessions. The working group discussions focused on the specific challenges outlined at the Forum and we need to ensure that the momentum created is not lost. By collaborating on these initiatives, we can drive meaningful change in our organisations and help address pressing global issues more effectively.

Luiza Gusma, leader of ATLETIL, Timor-Leste

What I sincerely hope is that the world has truly begun to listen to us. For too long, decisions about our lives were made without consulting us. That must change.

We do not want sympathy. We want fairness. We want to be included in policies, in communities, and in opportunities. We want a seat at the table, not as guests, but as equals.

I also hope that organisations like IDEA Nepal will receive more consistent and long-term support not just for one project or one year, but through sustained investment. We need training, resources, and capacity building so that we can continue to grow strong leaders within our communities.

Personally, this Forum reminded me why I choose to lead, not in spite of my experience with leprosy, but because of it. My pain has given me purpose. My silence has become my voice.

I will continue this journey until no one is excluded because of leprosy and every person is treated with respect, fairness, and love.

Dinesh Basnet, President of IDEA Nepal

I hope that following this Global Forum there will be a renewed global commitment to end stigma and discrimination against persons affected by leprosy. I also hope that the Kenyan government and the stakeholders will invest more in early detection, community-based care, and the inclusion of affected persons in policy-making, so that no one is left behind.

Gilford Otieno, IDEA Kenya

After the Global Forum, I hope there will be real change and commitment from all stakeholders to support the rights and dignity of persons affected by leprosy/Hansen’s disease. They have already identified clear needs and gaps through their assessments and discussions. Now, I hope that international, national, and local stakeholders will listen to their voices and take action based on the Commitment Letter, Recommendations, and Action Plan they developed together.

I hope to see more opportunities for capacity building, especially for grassroots organizations like MAPAL — including leadership training, office support, funding, and connection to regional and global networks. I also hope that the oversight committee formed by persons affected by leprosy will be taken seriously and supported to monitor progress and hold stakeholders accountable. I believe this Forum is a step forward, and I want to turn the inspiration and learning into real action for positive change.

Thandar Bo, MAPAL member and TLM Myanmar staff

It is certainly the first time that a committee has been appointed to monitor the agreements and documents that emerge as a result of the work carried out at the forum. This is a positive step. And it is also necessary to continue strengthening the leadership and sustainability of the organisations.

Lucrecia Vásquez Acevedo, legal representative of Felehansen, Colombia

I hope we will work towards the implementation of all that we have been able to work on during these 3 days of the Forum, especially with partners such as the WHO. This is so they can find solutions in relation to what we have been told or promised, such as that there will be no shortage of medicines as there was in Nigeria, and they will do their best to find solutions for those who are concerned about leprosy reactions.

Sandra Dongo, President of OPALCO, DR Congo

Following the Forum, I hope there will be stronger collaboration between OPLs. I also hope that people affected by leprosy will be able to receive not only physical and medical support but also mental health and psychosocial support. I hope there will be more awareness in the community and increased acceptance of treatment for leprosy. I also want to see a reduction in disability, stigma, and transmission of the disease. One important change I hope to see is the development and implementation of a legal framework that can provide protection for persons affected by leprosy, especially from discrimination and the loss of rights.

U Soe Win, President of MAPAL, Myanmar

I want to see a growth in our networking. These Fourms improve our networking experience so that we can learn from each other. That is very important for us.

Kofi Nyarko, IDEA Ghana

The forum gives us hope for better days, not because it has that power, as I mentioned earlier, but because it is our space, a space for people affected by Hansen’s disease. We don't know for sure how the world of Hansen’s disease will receive our demands and complaints. I don't know what the impact of these free thoughts will be, but I particularly hope that the people who have the power to change our reality also go through this process of immersion and don't put themselves in our shoes, because that is humanly impossible, but that they have empathy and work hard and quickly to improve the quality of life of people affected by Hansen’s disease.

Faustino Pinto, National Coordinator of MORHAN Brazil

We hope to change how we work independently from each other within the global IDEA community. We want to align to work together, at least across a few points, as a family. We are looking forward to the months ahead when the IDEA International family will develop a plan for how we'll work together. Prior to the Global Forum, we were working in our regional groups, but we want to change that so we can take care of one another and strengthen one another from now on.

Zoica Bakirtzief, Board Chair of IDEA International

Dr Niraj Mistry’s talk on “Mobilising Global Coalitions for Local Impact” showed how neglected issues can become global priorities when diverse actors work together. The HIV/AIDS movement proved that law, social mobilisation, business, and even unlikely partners could elevate health from the margins to the UN Security Council agenda. His examples of accountability, commitment tracking, and legal advocacy showed that when voices unite with urgency, governments and institutions must respond.

I hope the leprosy movement will follow this path. We need a coalition that includes not just health actors but also corporate leaders, legal systems, media, faith communities, and civil society. We must ensure rights-based legal protections that fight stigma as strongly as medicines fight disease, and adopt transparent systems so commitments lead to measurable action. Above all, I hope leprosy is reframed not only as a neglected disease but also as the struggle of neglected people — deserving of dignity, justice, and global solidarity equal to that given to HIV, TB, and malaria.

Jayashree Kunju, IDEA International

How are you feeling after the 3rd Global Forum?

Very excited!
Hopeful
Cautiously optimistic
Sceptical