Five reasons that Ethiopia’s Organisation of Persons Affected by Leprosy became one of the strongest in the world
ENAPAL is Ethiopia’s National Association of Persons Affected by Leprosy. Their origins extend back to the 1990s and their three decades of growth and success make them one of the world’s leading organisations of persons affected by leprosy (OPL).
As the leprosy sector increasingly recognises OPLs as crucial partners and seeks to support and strengthen them, we look at the history and structure of ENAPAL to learn from their success.
Below are five points that we would like to highlight. Of course, these are not the only five things that have contributed to ENAPAL’s success, nor are they necessarily things that can be replicated in every country. Nevertheless, we hope there is something you can learn from the below.
ENAPAL’s origins are in 1992. A group of patients at Addis Ababa’s ALERT Hospital (which specialises in leprosy) worked together to lobby the Ethiopian government for improved leprosy healthcare services across the country.
They received support from the leadership at ALERT Hospital, who granted them an office space within the hospital building – they had started out by meeting in the hospital gardens - however, much of the initial momentum lay with the patients themselves.
They called on the government to provide leprosy services through non-specialist hospitals and to increase the number of spaces in which leprosy patients could receive care. This call was ultimately successful.
For any fledgling organisation, a clear goal and direction can prove a powerful thing, as it did for ENAPAL. Following this early success, the group from ALERT Hospital went on to form the Addis Ababa Leprosy Association in 1994, before eventually being established legally as ENAPAL, the national umbrella association, in 1996.
ENAPAL’s early days saw it bring tangible change for persons affected by leprosy in Ethiopia. One significant reason for their success and longevity as an organisation is that they have consistently instigated tangible change for persons affected by leprosy across Ethiopia.
Today, ENAPAL are established as a successful lobbying organisation. Through their lobbying and advocacy, they have secured access to land for persons affected by leprosy, they have ensured the right to employment is recognised for persons affected by leprosy, and they have run panel discussions and workshops with officials on the rights of persons affected by leprosy under the CRPD.
ENAPAL has around 20,000 members across 73 associations in seven regions of Ethiopia. These members each pay a small fee for their membership, something they are happy to do because they see the impact that ENAPAL has in achieving change and securing funding for persons affected by leprosy in Ethiopia.
The future of ENAPAL is more certain thanks to their financial security. A small membership fee from their 20,000 members is a substantial part of that financial security. The fee also gives ENAPAL members a sense of ownership of the organisation and helps to encourage accountability and synergy.
Another reason for their financial security is the building that they built and own in Addis Ababa. The funds that they received from their members’ fees allowed them to leverage funds from the Sasakawa Health Foundation so that they could have the office building built.
The space that ENEPAL rent out in this building is crucial to ensuring the financial security of the organisation. They can also safely demonstrate to partners and potential funders that they are a safe organisation in which to invest.
Any organisation with a grassroots network of 20,000 people is a valuable partner and that is certainly the case for ENAPAL.
The Leprosy Mission’s partnership with ENAPAL dates back to the beginning of our presence in Ethiopia in 2010. Throughout that time, ENAPAL and The Leprosy Mission have been close partners. Both organisations have a philosophy of partnership and so each organisation welcomes the other to be closely involved with the development of their organisational strategies.
Beyond that, The Leprosy Mission and ENAPAL collaborate together to implement programmes. Together we run community-wide campaigns to raise awareness of leprosy. In the Amhara Region, we provide technical materials and training to improve the government’s rehabilitation services. ENAPAL are also one of the implementing partners of the We Are Able! programme, which The Leprosy Mission runs in countries across Africa in partnership with a consortium of Dutch NGOs.
This partnership is healthy, collaborative and mutually beneficial. It is indicative of the types of partnerships that ENAPAL has sustained throughout its history and The Leprosy Mission would not have achieved what it has since 2010 without the support and networks of ENAPAL.
ENAPAL is good at investing in the skills and capacity of its team, something that has often happened in partnership with The Leprosy Mission. The TLM team in Ethiopia has supported ENAPAL staff with training on safeguarding, leadership, conflict management, resource mobilisation, and financial management.
Where NGOs have skills and expertise, they should look to share these with OPL teams. This helps to end a culture of dependency, but also increases the value that OPLs can bring to OPL-NGO partnerships. Across the sector, we are increasingly recognising that creating a world without leprosy is more likely when we collaborate with strong OPLs, so skill sharing should become more and more routine.
