Niger - Continuation of support for the National Reference Centre for Sickle Cell Disease (CNRD) and the Niger Sickle Cell Disease Association (ALDN)

Context

With a population of 19.8 million, Niger was ranked next to bottom (187th out of 188) in the Human Development Index. It is one of the African countries where sickle-cell disease (a genetic haemoglobin disorder) is a major public health issue due to its high prevalence, estimated at more than 22% of the population.

To offer an appropriate response to overall management of the disease, the National Reference Centre for Sickle Cell Disease (CNRD) was established in 2009, following a partnership between the Niger Ministry of Public Health, the Government of the Principality of Monaco, Amade Mondiale and the Niger Sickle Cell Disease Association (ALDN).

The CNRD, which is managed by the Niger Ministry of Health, operates with funding from the State supplemented by its own resources. Sickle-cell patients are offered care during crises and subsequent follow-up. Currently, the Centre’s six doctors manage 5,700 patients. The Centre is unable to carry out all of its functions due to the limited annual budget it is allocated. The CNRD remains dependent on external funding for its training, prevention (screening, awareness, education) and research and development activities.

The ALDN is an organisation established by sickle-cell patients (adult patients and parents of children with the disease). It works to improve treatment for the disease. The ALDN cooperates with the CNRD, which hosts its head office, and its goal is to offer patients local social and psychosocial support, to raise awareness among policymakers of the seriousness of the disease, to combat the exclusion suffered by patients, to help alleviate the financial burden on families of treating the disease, and to promote patients’ social and professional integration.

For a number of years, Monaco’s Official Development Assistance Program has regularly supported the implementation and expansion of the CNRD’s activities and the organisation of the ALDN. The two organisations have received targeted support from STEPS Consulting Social at the suggestion of the Department of International Cooperation. With a view to gradual disengagement and in order to build the capacity of the Centre and the Association to attract other financial support, the Department of International Cooperation is continuing this technical support in 2018.

This support is part of the current partnership with the CNRD (Memorandum of Understanding signed 9/11/2017) and with the ALDN (Partnership and Funding Agreement signed 17/7/2017), and aims to support both organisations in implementing their activities, conducting joint actions, achieving outcomes, and drafting various reports.

Project owner

National Reference Centre for Sickle Cell Disease (CNRD)  and the Niger Sickle Cell Disease Association (ALDN).

Overall objective

Help the CNRD to build its capacity to manage development projects linked to its key missions, and the Niger Sickle Cell Disease Association (ALDN) to put in place a more realistic programme of activities and better management while also expanding collaboration between the two organisations.

Specific objectives

• Support the CNRD and the ALDN with implementation of activities financed in 2018 by Monaco’s Official Development Assistance Program
• Support work to improve the operations of the CNRD and the ALDN
• Provide assistance with the drafting of interim and final reports
• Help to expand collaboration between the ALDN and the CNRD

Beneficiaries

Direct beneficiaries:
CNRD staff, the Association and all members of the National Executive Bureau and the presidents of the 8 regional branches.

Indirect beneficiaries:
The 5,700 sickle-cell patients and 1,798 members of the Association.

Anticipated outcomes 

For the National Reference Centre for Sickle Cell Disease (CNRD):

• Provisions enabling indicators to be monitored 
• Revised budget consistent with donor expectations
• Clear cost recovery policy adopted by the CNRD
• Interim performance report and final report produced by the CNRD before 31 December 2018
• Development of a plan to extend the pilot initiative in schools for two years (2019–2020) to be presented for co-funding by Monaco’s Official Development Assistance Program and other identified donors

For the Niger Sickle Cell Disease Association (ALDN)

• The schedule of activities for 2018 is reviewed on the basis of 2017 outcomes
• The new statutes adopted in 2017 are implemented by ALDN members at the national level and in regional branches
• 2017 overall financial statements for ALDN
• ALDN performance report produced by 31 December 2018

For the National Reference Centre for Sickle Cell Disease and the Niger Sickle Cell Disease Association

• A general agreement is jointly developed in 2018 during a workshop for the two organisations
• As part of the pilot screening and awareness initiative in schools, a specific agreement is jointly developed in 2018