A Beacon of Hope
For our first issue of 2025, we invite Lepra’s Advocacy Manager, Mowmita Basak to speak about the approach which is helping to transform endemic communities.
Throughout my first three years at Lepra, I have witnessed firsthand how tackling diseases like leprosy and lymphatic filariasis (LF) demands more than just medical solutions.
These diseases, which disproportionately affect the poorest and most marginalised, are deeply entangled with complex cultural and social influences. Our Self-Support Groups (SSGs) and federations in Bangladesh and India aim to address these complexities, not only by improving access to healthcare but also by dismantling the barriers that perpetuate exclusion and discrimination. Our vision is to foster a more inclusive, stigma-free, and equitable society.
Supporting Communities through SSGs and Federations
SSGs provide safe, supportive spaces where people affected by leprosy and LF can learn self-care practices, manage disabilities, and access their rightful social entitlements. They also serve as platforms for sharing personal experiences and building community solidarity, offering members the confidence to challenge societal norms and advocate for their rights.
However, forming and sustaining SSGs and federations has not been without its challenges. Social hierarchies, entrenched stigma, and systemic inequities associated with diseases like leprosy and LF complicate our efforts. During a project visit in Madhya Pradesh, I asked a member of an SSG what inclusion meant to her. She responded without hesitation:
“Inclusion means we can all sit together at the same level, regardless of our castes.”
Her words encapsulate the daily struggles of those feeling alienated by both disease and social status.
Addressing Cultural and Social Barriers
In Bihar, India, cultural norms often deter married women from undergoing leprosy screening unless attended by female health officials. Similarly, in Bangladesh, fears tied to societal beauty standards can affect treatment adherence. My colleague, Ruby Bukhari, recently conducted capacity development training in Bangladesh.
She encountered concerns from a woman fearful that her treatment for leprosy, multidrug therapy (MDT)
Lepra’s self-support group in Rangpur, Bangladesh played a vital role in helping 65-year-old Samija Khatun overcome the physical, emotional and social impact of her diagnosis. Scan the QR code to read her story.
Mowmita Basak Advocacy Manager
SCAN
A Grassroots Revolution
In the heart of India’s rural landscapes, where poverty meets resilience, a quiet revolution is reshaping the way the world addresses neglected tropical diseases (NTDs).
As we come together to ‘Stand as One’ for World Leprosy Day, leprosy, long a symbol of stigma and despair, continues to cast a shadow over these communities, robbing individuals of their dignity and opportunities.
Yet, amidst these challenges, hope rises—not from the halls of global summits but from the villages where community members are stepping forward as changemakers.
For over a century, Lepra has been at the forefront of addressing diseases like leprosy. With a legacy of 100 years, the organisation has mastered the art of listening to communities, empowering them, and building partnerships to overcome adversity.
Today, Lepra is dismantling the barriers that keep communities in the shadows of stigma and exclusion.
A Network of Empowerment: Building Bridges of Capacity
Central to Lepra’s work is the belief in the power of partnerships. Through Community-Based Groups (CBGs) and federations, we have built networks
These groups become lifelines, offering support and hope to those affected by NTDs. Global research validates the effectiveness of such grassroots models, but our on-the-ground experience transforms theory into practice.
Social recognition and deeply held values motivate ordinary people to do extraordinary things. Volunteers become trusted community guides. Recognising their contributions sustains engagement and amplifies impact, creating a ripple effect of empowerment.
However, motivation alone is not enough. Volunteers also need tools, training, and a clear sense of purpose. Lepra’s training programmes equip them with essential skills to educate, reduce stigma, and advocate for their communities.
Breaking Barriers, Transforming Perceptions
For centuries, leprosy has carried various misconceptions. Addressing this stigma demands storytelling.
Lepra’s federations and CBGs create platforms for affected individuals to share their journeys. These challenge stereotypes and reshape perceptions.
Advocacy becomes personal, policies inclusive, and communities stronger. The federations also act as intermediaries, bridging the gap between individuals and local authorities.
Advocating for social entitlements and inclusive policies ensures that the voices of the vulnerable are heard.
UPLIFT: A Blueprint for Sustainability
Among Lepra’s transformative projects is UPLIFT, a research-driven initiative creating scalable Community-Based Groups that integrate self-care, stigma reduction, and community engagement
UPLIFT’s holistic approach ensures it reduces stigma, promotes self-efficacy, and integrates into community structures, continuing to function even without external support.
Lessons for the World
The implications of Lepra’s work extend far beyond India. Communitydriven health interventions are transformative. When local voices are elevated, strategies become culturally relevant, accessible, and sustainable. Health outcomes improve, societal impact deepens, and change becomes enduring
Spanning India, Bangladesh, and Ethiopia, UPLIFT empowers individuals affected by leprosy and other skinNTDs to lead inclusive and fulfilling lives
The programme follows a structured approach, establishing relationships, building trust and capacities, integrating into communities through advocacy, and fostering pathways for economic empowerment.
Objectives include improving the quality of life for CBG members, fostering societal acceptance, and enhancing empowerment and ownership.
From leprosy to lymphatic filariasis, Lepra’s blueprint resonates globally, serving as a call to action for governments, NGOs, and donors to invest in people—prioritising partnerships and progress over quick fixes.
As India addresses neglected tropical diseases (NTDs), grassroots organisations like Lepra offer a roadmap for hope, demonstrating that overcoming diseases isn’t just about medicine; it’s about humanity.
The world must take note and act not only to address diseases but to foster a future where resilience and dignity become the norm, not the exception.
To learn more about our innovative approach, please visit:
www.lepra.org.uk/what-we-do
Taslima’s Journey
We recently caught up with Taslima Akter, the inspirational community leader who overcame her own diagnosis to become an influential advocate for people affected.
In 2017, 20-year-old Taslima noticed a loss of sensation in her left little toe. At the time, she had worked with people affected by leprosy for five years and immediately recognised it as one of the symptoms.
Her diagnosis was confirmed by the local health complex where she was given a six-month course of multidrug therapy (MDT). Fearing rejection from the local community, Taslima took the medicine in secret.
When family members discovered her diagnosis, she was grateful for their support. Since completing treatment, Taslima has had no further complications.
“I am pleased that I noticed by my symptoms early and took the treatment.”
After her diagnosis, Taslima joined a local Self-Support Group (SSG) where she met with other people affected who shared their stories of recovery from the physical, social, emotional and financial impact of leprosy.
Inspired by the support she received, Taslima underwent training to become a Community Champion and actively educated people on the symptoms of leprosy, helping to detect cases early, encourage treatment and ultimately prevent long-lasting disabilities.
“When I referred people to the health centre, and they were officially diagnosed that was a precious moment for me.”
Two years after her recovery, Taslima married. Her husband is aware of her previous diagnosis and supportive of her work. The couple have a two-yearyear-old daughter.
As her skills developed, Taslima adopted the role of a Mental Motivator, providing support to those whose emotional wellbeing was impacted by their diagnosis.
“Life feels worthless without good mental health.”
Taslima went on to become a secretary of a SSG and later assisted in the formation of the Bogura Federation. The grassroots organisation brings together around 100 SSG’s which help community members to overcome the physical, emotional, social and financial impact of leprosy.
In 2024, Taslima was honoured to be appointed the first female leader of the Bogura Federation. Since taking on the role, she has been working to establish federation committees in the region’s 12 subdistricts.
“After forming these committees, we will revitalise SSG’s that have become inactive due to the COVID-19 pandemic… and strive to connect members to the relevant support.”
Taslima explains capacitybuilding is at the core of the SSG’s aims with the need to promote sustainability:
“Assessing individual strengths and abilities is the first step, allowing us to tailor training to members’
Additionally, we are encouraging members to utilise abandoned land for farming. Those interested in agriculture can grow vegetables or cultivate fish in ponds, generating income.”
By monitoring available government schemes, Taslima says the Federation can link its members to relevant opportunities.
“We frequently engage with government officials to explore how we can access these resources. However, there are barriers, such as age limits for certain benefits. For example, sewing machines are often provided to women along with dressmaking training, but many of our members are over 35 years old, while the training is only available for those aged 18 to 35. Understanding and addressing these barriers is crucial.”
Taslima reflects on how her new position has made an impact personally and to the wider community:
“If I hadn’t taken on this leadership role, I would have never realised my inner potential or my level of selfconfidence to do something impactful.
Understanding the needs of those affected, standing by them in times of need, and advocating for their rights are all parts of this leadership journey. I feel proud to represent them.”
In December 2024, Taslima was proud to represent people affected by leprosy at a joint meeting of the National Leprosy Programme and the Leprosy and Tuberculosis Control Centre.
To hear Taslima speaking about her journey firsthand, please follow our Youtube channel, where we will be bringing news and updates from The Bogura Federation, in the coming weeks and months.
www.youtube.com/@LepraOrgUk
The BPHRC Turns 25!
14 December 2024 marked the 25th anniversary of the opening of Lepra’s Blue Peter Public Health and Research Centre (BPHRC) in Hyderabad!
Many will remember, the centre was established following a highly successful 1996 campaign of the children’s BBC Television programme, Blue Peter.
Following the programme’s coverage of “Leap for Lepra” - a campaign launched by British triple jumper Jonathan Edwards, the charity was invited to submit an application for a Blue Peter Appeal which was successfully approved.
Launched on 8 November 1996, the appeal asked viewers to raise funds through Bring and Buy Sales. The target of £500,000 was to purchase
Anticipating extra post, Lepra were grateful to the Army for making space available at Colchester Garrison Barracks. During the first two weeks of the appeal, 60,000 items of mail were received, 20,000 of which were received in just one day!
On Friday 3 January 1997, the Blue Peter team announced that the target of £500,000 had been reached with a new target of £1.5 million set!
By the beginning of April 1997, the target of £1.5m had been smashed with the final total reaching just over £2.8m (that is the equivalent of raising over £4.5 million today!).
Stuart Miles revisiting
The centre, combining scientific expertise and state of the art research facilities, continues to work closely with communities affected by leprosy, lymphatic filariasis (LF), tuberculosis (TB), and other neglected tropical diseases (NTDs). The research aims to improve quality of care and develop new treatments and techniques for managing NTD-related disabilities.
The centre not only researches physical care but also explores the economic and social impact of the diseases; helping to identify the wider needs of people and communities affected, and to design projects in a more appropriate and effective way.
Shine a Light for World Leprosy Day!
A special thank you to all of the buildings in our home town of Colchester, who once again joined us in shining a light on leprosy for WLD25!
In Portsmouth, the family and friends of Elin Martin gathered under the Spinnaker Tower, which was illuminated in her memory.
Elin dreamed of becoming a doctor, dedicated to fighting neglected diseases, but tragically passed away in 2022.
Her family and friends support Lepra in her name, through inspiring fundraising challenges, which are helping to change countless lives, for which we are truly grateful.
The Mercury Theatre and Jumbo Tower
Colchester Castle
Colchester City Hall
The University of Essex
The Spinnaker Tower, Portsmouth
Help us ‘Stand as One’ in 2025!
During the 3 minutes it takes to boil a kettle, another person will be diagnosed with leprosy.
With the support of your social network, we can raise awareness of this forgotten disease, and raise vital funds to help support people through the physical, emotional and social impact of this forgotten disease. It’s as easy as 1, 2... tea!
Making a success of your Lepra Life-changing Tea couldn’t be easier!
All you have to do is keep the hot drinks flowing, ensure you bake or buy lots of tasty treats like scones and cakes for all of your guests, and simply ask for a donation in return.
To register your event, and receive our free fundraisers’ pack please visit our website or scan the QR code: www.lepra.org.uk
Putting the FUN in fundraising!
Thanks to our partnership with Run for Charity, we are now able to offer a huge range of exciting and fun ways to support our work.
From running events, through some of the world’s most famous cities, like Paris, Chicago, and Berlin, to jumping your way through inflatable obstacle courses, swimming challenges, cycling and even skydiving!
Lepra Online
Our new fundraising and events webpages will help you, your family and friends see what is coming up in your local region for 2025.
You can now search by event and activity type, to help you to easily find the right event for you!
www.lepra.org.uk/events to see what is happening near you in 2025!
Community fundraising is changing lives!
Every year, hundreds of community groups, universities, workplaces and places of worship, come together to raise awareness and vital funds to help support our work in India and Bangladesh.
We can help support your event with a variety of resources, media, sponsorship forms, ideas and tips to help make your event a truly memorable occasion! Scan the QR code to find out more!
£15 will provide a slit skin smear kit that can diagnose up to 50 people with signs of leprosy. They are most accurate way of providing a diagnosis and help ensure people are able to access early treatment and support.
£50 will provide counselling services for 5 people affected by leprosy, and their families. Counselling helps improve wellbeing, fosters resilience, and greatly enhances people’s quality of life.
Help keep our administration costs low. 1 2 3 4 5
Help people and their families affected by leprosy and LF to receive the right care, at the right time and in the right place.
Help us plan future projects in the areas which need it most.
Spread your giving across the year, and change or stop payments at any time.
Stay informed through regular newsletters and progress updates.
£100 will provide livelihood support to families affected by leprosy, aimed at strengthening their living conditions and addressing unemployment caused by the stigma of the disease.
Five reasons to give regularly
