LOCATION

Democratic Republic of the Congo, Madagascar, Congo-Brazzaville, Cameroon

LOCAL PARTNERS

CECFOR (DRC), IMRA (Madagascar), GEDREPACAM (Cameroon)

PROJECT LAUNCH

2014

 IECD – © 2017

Affiah is a child with sickle-cell disease. Discover her story in the documentary filmed in DRC (on our website), the aim of which is to inform local communities about the disease and fight discrimination. A short version aims to encourage public authorities to become more involved in this public health issue.

Tackling Sickle-cell disease in central Africa and Madagascar

1 rst

genetic disease in the world

50 % à 75 %

of children who are suffering from the disease will not see their fifth year

Sickle-cell disease: what is it ?

© 2017 IECD

Sickle-cell disease is the leading genetic disease in the world. It affects the blood and causes intense pain, anemia and an increased risk of infection.

In Central Africa and Madagascar, about 20% of the inhabitants are healthy carriers of the sickle-cell disease gene. Every year, almost 2% of newborns are affected by the disease and 50 to 75% of them die before they are five. Those with sickle-cell disease also suffer from social exclusion because of a lack of awareness among the population about the disease.

However, a neonatal test and early treatment can help to improve life expectancy and their living conditions.

The IECD Program

The program aims to reduce mortality among children suffering from sickle- cell disease and improve their living conditions through support for different healthcare structures on the basis of the following lines:

– the screening of children at birth;

training of healthcare workers on the management of sickle cell disease;

monitoring and management of sickle-cell disease patients;

educational therapy of the parents of sickle cell disease patients;

advocacy with health authorities to make sickle cell disease a public health issue;

strengthening of the Network Study of Sickle Cell Disease in Central Africa (REDAC) to promote scientific exchange and share best practices.

THE REDAC CONGRESS (Network Study of sickle-cell disease in Central Africa) – 25/27 May 2016 – Kampala (Uganda)

The congress, organized every two years, is becoming increasingly famous: in 2016, it brought together more than 500 participants from 18 countries in Africa, Europe and America. This high attendance bears witness to the importance of sickle-cell disease in terms of public health. Apart from sharing experiences, which improves practices when caring for the sick, this international congress offered a great opportunity to discuss the latest research and new therapeutic data. Thanks to the presence of several African health ministers, it was also an opportunity to continue to appeal for more attention from health authorities with regard to the situation of patients.