A world free from prejudice and disability due to leprosy.
OUR MISSION
Led by evidence, we work with people affected by leprosy, particularly the neglected, reducing transmission and promoting well-being.
OUR VALUES
One Lepra: People-centred, evidence-led, inclusive, respectful, caring, accountable, effective and innovative.
2024
The end of a century
At the beginning of this year, we were determined to regain momentum after two years of pandemic and lockdowns, which have had such a dramatic adverse effect on the care, treatment and support for people affected by leprosy and lymphatic filariasis (LF) around the world.
Health care services had been shut, and essential support systems were unavailable. The number of new reported cases of leprosy and LF dropped as a result, but the lower numbers were misleading. Many cases were not being diagnosed, rather than not happening.
We knew we had our work cut out for us – to reinitiate and reinvigorate our services and projects, to recapture the ground that had been lost, and to get back on the front foot in our work to address leprosy and LF in India and Bangladesh. We aimed to emerge stronger from COVID-19, and we now look back with pride at what we achieved this year.
It has been a productive year for Lepra, in which we provided direct care, treatment and support for more than 26,000 people affected by leprosy and 10,000 affected by LF. We trained 13,000 front line health workers, distributed 20,000 pairs of protective sandals, and reached nearly 2.5 million people with health education related to the diseases.
Beyond the numbers, Lepra’s staff mobilised together to help regain the post-pandemic momentum, and we are continually proud of their dedication and commitment to our cause. Through
Suzanne McCarthy
Ltheir efforts, we have also initiated new projects with our partners, including Effect Hope (with the ASPIRE project in Bihar, India), Rotary International (with the physiotherapy and shoe technician training project in India), and the Sasakawa Health Foundation (with ongoing support to the Bogura Federation of people affected by leprosy in Bangladesh). We plan to build further on this work in the years ahead.
Another highlight of the year was the International Leprosy Congress (ILC) in Hyderabad, where the global leprosy community came together for the first time since pre-COVID to learn, share, reunite and reignite our collective efforts to control this disease. We were both privileged to attend and participate, and came away energised and focused, and with a clearer vision of what still needs to be done to address leprosy and LF globally.
While it is possible to regain momentum in one year, it takes multiple years to sustain and ensure progress. That is the spirit and commitment that we are confidently taking with us, into the new Lepra year.
In all of this, we continue to be in awe and full of gratitude for the support and backing of our many partners and supporters. We have all lived through a year of economic pressure and cost of living worries, and it is nothing short of remarkable that our donors have continued to dig deep and support our cause.
This also gives us hope for the future and strengthens our resolve to continue to do all we can to realise a world free from prejudice and disability due to leprosy and LF.
Jimmy Innes Chair of the Trustees Chief Executive
epra is a non-governmental organisation (NGO), and has been working to find and assist people affected by leprosy since 1924.
Since that time, Lepra has had two defining characteristics. Firstly, we are secular. A positive decision to favour no one and everyone. Secondly, we prioritise being evidence-led.
Leprosy is a communicable disease, caused by bacterium, which affects the skin and peripheral nerves
of people. It can result in severe disability, prejudice and even cause blindness. Leprosy and LF remain two of the least understood and most widely ignored diseases in the world. Millions of people are affected, with numbers continuing to rise. If left undiagnosed or untreated, leprosy and LF can cause life changing disabilities.
Leprosy can incubate in a human anywhere from 6 months to 20 years. As a result, it is often difficult to diagnose the disease until it has already caused severe damage. Working in India and Bangladesh, we find, diagnose, treat and rehabilitate people with leprosy. Specialists diagnose leprosy using skin test patch anaesthesia, skin smears and non-invasive sensory investigation.
We also work tirelessly to fight the prejudice and discrimination they face in their daily lives.
Our vision is a world free from prejudice and disability due to leprosy.
2024
A Time for Change
Lepra’s story began in 1923, when Major General Sir Leonard Rogers, ex-Indian Medical Service, agreed to join Rev. Frank Oldrieve in forming a new association with the aim of highlighting the impact of leprosy within the Commonwealth.
On 31 January 1924, the British Empire Leprosy Relief Association (BELRA) was officially founded by Rogers and Oldrieve, with the financial help of Sir Frank Carter, a Calcutta businessman and philanthropist. BELRA was inaugurated by the Prince of Wales (later King Edward VIII) at Mansion House in London.
Leprosy remains a widely forgotten misunderstood disease and Lepra’s long-standing support from the Royal family has helped us keep leprosy in the public’s collective consciousness. Her Late Majesty The Queen became Lepra’s patron following her succession to the throne on 6 February, 1952. She followed in the footsteps of her father, King George VI who was patron BELRA.
The Queen’s deep empathy for people affected by leprosy, as demonstrated throughout numerous visits to our programmes, centres and fundraising events, has played a key role in breaking down the barriers of prejudice and discrimination.
At the inaugural meeting of BELRA, held at Mansion House in London on 31st January 1924, a message from H.R.H. The Prince of Wales (Edward VIII) was read out:
Conceived as a medical organisation, Lepra spearheaded outpatient work instead of following the traditional method of compulsory segregation. From his experience, it was clear to Rogers that it was important to treat leprosy in its earliest stages, and that the segregation system reinforced social prejudice, causing people to hide their diagnosis, which often led to further complications and significant disabilities.
“The elimination of leprosy from the British Empire is a wonderful ideal alike for British Medical Science and for British Administration. His Royal Highness is confident that this ideal can be realised if the Association is accorded the support it merits”.
Lepra’s founding principles remain true in 2024. We continue to take a pioneering, person-centred approach, advocating for early case detection, building and strengthening community-led healthcare, fighting leprosyrelated discrimination and providing a voice for some of the world’s most vulnerable people; those who are still experiencing the physical, social, economic and emotional impact of leprosy and LF.
2030
The Road to 2030
By Jimmy Innes Lepra Chief Executive
As Lepra turns 100 years old, it is a time for us to celebrate and look back on a rich tapestry of history and reflect on all of our many achievements throughout the years.
From our inception in 1924 through our early decades as the British Empire Leprosy Relief Association (BELRA), to our work supporting trials for the first drug to successfully cure leprosy, to our renaming as Lepra, and across the years to now: here in 2024.
A centenary is no small thing. For me, as the Lepra UK CEO, I am proud and privileged shoulders of all those who have gone before and who built the organisation that I am part of today. Whilst I am but a blip on the Lepra clock of time, it is my honour to be leading the organisation at this momentous time in our history.
One thing that I am immensely proud of about Lepra is our focus on the needs of the individual. It is one of our strongest values. Leprosy and lymphatic filariasis (LF) are numbers of course: they are mainly about people.
Every person affected by leprosy or LF has unique needs and support. Every person has unique pathways to full inclusion in society.
And as we rightly celebrate this
Our Key Moments
The first issue of ‘Leprosy Notes’ was printed in 1928, a free to access scientific journal, aiming to share research and findings from field workers across the world. The title of Leprosy Review was first used in 1930.
Lepra was founded in 1924, originally as BELRA, by Sir Leonard Rogers, Reverend Frank Oldrieve and Sir Frank Carter
In 1945, Dr Robert Cochrane began studies with sulfone derivatives, and was the first to use dapsone in the treatment of leprosy, laying the groundwork for treatments still used today.
In 1936, BELRA launched its ‘Child Adoption Scheme’, whereby supporters in the UK and elsewhere provided direct financial assistance for support and treatment. The Royal Family supported the scheme, including our then future patronHer Late Majesty Queen Elizabeth II
In 1959, BELRA produced the first made to measure shoes to protect ulcerated feet and since that time footwear has been a critical part of our work.
In 1953, BELRA established the first dedicated leprosy research centre in East Africa. The first Director of the East Africa Leprosy Research Centre was an Australian doctor called Dr. James Ross Ines
In 1961 BELRA helped to develop Clofazimine (B663). The East Africa Leprosy Research Centre played a key role in the trials of B663, which to this day remains a part of the multidrug therapy used for treating leprosy. In 1964 the changed its BELRA to LEPRA reflect an understanding of the changing Shortly after the High Commissioner for Malawi and President, Viscount Boyd, approved agreement Malawi Pilot Control project, subsequently work.
organisation name from LEPRA to understanding changing times after this, In 1965 Commissioner and LEPRA’s Viscount approved an on the Pilot Leprosy project, which subsequently began
On 3 August 1989, Lepra’s sister organisation ‘The LEPRA Society of India’ (LEPRA India) held its inaugural meeting in Hyderabad. LEPRA India has extensive reach throughout the country, and their organisational independence provides a unique ability to help support the Indian government’s National Leprosy Eradication Programme (NLEP).
In 1975, Lepra became one of the first organisations to implement the use of multidrug therapy (MDT). It is estimated that more than 16 million people have been treated with MDT over the past 40 years
In 2005, author and long-term Lepra supporter Victoria Hislop, released the award winning novel ‘The Island’, which helped to shine a new light on this ancient disease. Now a Lepra Ambassador, Victoria has since released ‘One August Night’ and the children’s book ‘ Maria’s Island’, which have helped bring awareness of leprosy to new generations of children and adults.
In 2019 Lepra Trustee and Emeritus Professor Diana Lockwood travelled to India with documentary photographer Tom Bradley to create a thought-provoking series of portraits and real-life stories which challenge the myth and misconceptions surrounding leprosy. In the spring of 2023, Diana and Tom took the project to Bangladesh, to find real-life stories of people affected by leprosy in a postpandemic landscape.
Following the Blue Peter Lepra appeal in 1996 which raised £2.8 million, the Blue Peter Health and Research Centre (BPHRC) was officially opened on December 14th 1999. Providing vital leprosy, TB and HIV research, to find more effective treatments, and ways to prevent disabilities.
In 2015, Pavers funded our first mobile footwear unit, which travels across isolated areas of India, producing and delivering custommade footwear, helping to prevent injury and disability for people affected by leprosy and lymphatic filariasis (LF).
During Lepra’s centenary year in 2024, an ambitious new strategy will be launched to help the organisation provide an even greater contribution toward the WHO 2030 global leprosy strategy.
Lepra’s 100 years of research and innovative programme design, will continue to provide the very best in evidenceled, person-centred and holistic healthcare to some of the world’s most vulnerable communities
To learn more about Lepra’s history and how our innovative approach to healthcare helps to improve the lives of thousands of vulnerable people every year, please visit:
www.lepra.org.uk/centenary
India
2022-2023
From detection, disease and complications management, self-care and rehabilitation, disability and morbidity management, to social, psychological, employment support and advocacy. Our evidence led approach represent one hundred years of experience in working with neglected tropical diseases.
In India, the number of leprosy-affected people directly reached through our diagnosis, treatment, and care is around 26084 and the number of LF-affected beneficiaries is around 8385 this year.
As a part of our health system strengthening goal, 536 government healthcare staff were trained through different projects and a total of 8600 health workers, doctors, and ASHAs (Accredited Social Health Activists) received training from Lepra. All of these dedicated staff and volunteers made sure 31,958 people affected received self-care training.
In 2022, Lepra piloted its first mental health-focused operational research project ‘Samarth’ in Madhya Pradesh that formed 98 functional self-support groups (SSGs). People affected by leprosy and LF were provided with 153 pairs of protective footwear and ongoing therapeutic counselling.
Samarth continues our holistic, person-centred approach, providing comprehensive care and support for physical symptoms as well as vital care for people’s emotional health.
PROGRAMMES
Our programmes continue to support the most vulnerable Our wide range of services provide innovative, holistic
Furthermore, around 642 hydrocelectomy surgeries for LF-affected men and 280 reconstructive surgeries were performed that improved the functionality and mobility of people affected.
Finally, we embarked on 2023 with a new project called UPLIFT, an operational research project in Bangladesh, India, & Ethiopia.
communities, in endemic regions of India and Bangladesh. holistic care within the individual’s needs at our core.
In Bangladesh, Lepra supported five projects throughout 19 districts from 2022 to 2023.
Proyash, our health system strengthening project, entered its 10th year in 2022. The project continued to encourage government ownership of leprosy healthcare services while improving the technical skills of healthcare staff at district and sub-district levels.
Our teams were able to improve the skills of over 1000 healthcare personnel who received training on early diagnosis, treatment, and management leprosy and its consequences as a result of this initiative.
Furthermore, this year, the programme piloted two initiatives in two new operating environments: the Tea Gardens in the country’s east and three high-endemic lymphatic filariasis (LF) regions in the south.
These new programmes offered 450 people affected by leprosy and LF with self-care practise training sessions and tools in order to enhance illness management and avoid further disability.
Another highlight was the participation in November of three people with lived experience of leprosy in a People’s Forum in Hyderabad (India), where they presented their personal experiences, aspirations, and demands on an international stage as part of the 2022 International Leprosy Conference.
Finally, in the first two months of 2023, two new projects were launched:
Mind to Heart, a mental health support project that provides professional structured counselling to people affected, and UPLIFT, an operational research project, a multicountry project which seeks to develop a comprehensive community-based group model, in conjunction with people affected by leprosy and other experts.
If successful, the project design model could be applied in other contexts and to other NTDs worldwide.
A thank you to all of our amazing partners, supporters, donors, volunteers, ambassadors, trustees and staff
To find out more about Lepra’s work in India and Bangladesh, and to receive news updates, please visit:
www.lepra.org.uk/what-we-do
Real Life Stories Mr Shaik Musthafa
In August 2022, Jimmy had the pleasure of meeting Mr Shaik Musthafa, 40 years old father of three children, from Chillakallu, Andra Pradesh, India.
In 2018, Mr Musthafa started to notice pain, and problems moving his left hand. On the advice of a local medic, he made contact with Lepra’s community team, who carried out a Nerve Function Assessment (NFA).
Suspecting that he may be experiencing symptoms associated with leprosy, the team referred him to the local Primary Health Centre (PHC) for formal diagnosis and medication.
The health centre staff conducted a skin biopsy and Mr Musthafa was diagnosed with multibacillary (MB) leprosy. He was started on a 12-month course of multidrug therapy (MDT).
During follow-up visits, it was discovered that despite MDT treatment, his hand was showing significant nerve damage, which would lead to permanent disability without further intervention.
After the surgery, Lepra provided post-operative physiotherapy exercises to aid his successful recovery.
As a manual labourer, he was however left unable to continue with such physically demanding work. So during his recovery, Mr Musthafa looked for new opportunities to help him support his family.
With Lepra’s help, Mr Musthafa was able to secure a small investment through the socio-economic rehabilitation fund, to allow him to start his own small business.
With this support, he was able to purchase the goods and products he needed from a wholesale market, to start a small electrical shop in Jaggaiahpeta, selling a range of popular items to his local community. He is already making enough money to support his family and his children are receiving a good education.
When asked if he had faced any discrimination since opening his shop, Mr Musthafa said:
“Oh, no! This is just a small disease, like any other disease that you can be cured”
With your kindness and support, Lepra’s programmes in India and Bangladesh, have continued to reach thousands of the world’s forgotten people.
9,842
We diagnosed and provided care for 9,842 people affected by LF.
1,746,916
Together we screened 1,746,916 people for leprosy.
1,194
We helped 1,194 people affected by leprosy or LF access government support.
40,024
2,437,979
We reached a total of 2,437,979 people through health education and events related to leprosy and LF
26,693
We diagnosed and provided care for 26,693 people affected by leprosy.
We trained 40,024 people in self-care within their own community.
642
We facilitated 642 hydrocele operations.
36,535
We reached 36,535 people, providing diagnosis, treatment and holistic care.
284
19,591
We issued 19,591 pairs of protective sandals.
547
547 people were given nutritional support during humanitarian crisis.
1,551
We trained 1,551 medical officers and associated clinical staff.
903
We supported 903 self-support groups.
284 people affected by leprosy received reconstructive surgery to restore the movement and appearance of their hands and feet, reducing prejudice and rebuilding their self-esteem.
11,424
12,835
We trained 12,835 front line health workers.
11,424 people took part in meetings to advocate for their rights.
Photo by Tom Bradley
Photo by Tom Bradley
Photo by Tom Bradley
How you helped
Fundraising is an essential part of our work and determines the impact we are able to make on some of the world’s most vulnerable people.
In 2022-2023, thanks to the incredible kindness and generosity of our supporters and partners, we have managed to raise £1,621,922 of unrestricted funding. With your support, we are able to work responsively, with the people who most need our help. Our most sincere thank you for your ongoing support.
Visit our website to find out more about Lepra’s impact in India and Bangladesh - www.lepra.org.uk
GiftAid is one of the simplest and most effective ways to donate more to charity.
Last year, Lepra was able to claim over £106,930 in Gift Aid at no extra cost to our generous supporters. I am writing to highlight the significance of this funding on our life-changing work, and to ask you to consider signing a Gift Aid declaration today so that your donations can reach even further.
What is Gift Aid and am I eligible? The Gift Aid scheme allows charities to claim extra money from HMRC. You are eligible for Gift Aid if a donation is from your own funds, and you have paid the basic rate of tax, we can claim an extra £25p for every £1 you donate. The fantastic news is that once you have signed up to Gift Aid through the declaration form, Lepra is able to claim Gift Aid on your future donations, and donations from the previous 4 years.
By signing a Gift Aid declaration today, you can help Lepra to claim additional support for our project work. Taking 2 minutes to fill out a Gift Aid form could mean all the difference for more people like 17 year old Priti, who thanks to your support overcame the emotional impact of leprosy and has regained
confidence and hope for a find new hope for a brighter future.
How do I sign up for Gift Aid? You can complete our online form at www.lepra.org.uk/get-involved/ donate/a-guide-to-gift-aid, or alternatively, you can call us on 01206 216 700. The declaration form confirms that you are a UK taxpayer, and that your charitable donations to us are not greater than 4 times what you have paid in tax in that tax year.
It is important to tell us if you stop paying tax or if you change your address. For more information on this, including if you are a higher rate tax payer, or if have any other questions, please get in touch with us by emailing donor support@lepra.org.uk or call us on 01206 216 700.
We are happy to help. Once again, on behalf of everyone we work with –thank you for your invaluable support. Together, we will beat leprosy.
