European Development Days 2015 flagship event of European Year for Development

June 4, 2015   World

International Federation for Spina Bifida and Hydrocephalus | Source

The 2015 edition of the European Development Days (EDD15), Europe`s largest forum on global cooperation and development, takes place during the 3rd and 4th of June in Brussels. This year, participants will address issues such as the conditions for creating sustainable growth, the promotion of universal and fundamental rights, and how greater cooperation among all actors can help to eradicate poverty and reduce inequality. EDD15`s theme is "Our World, our dignity, our future" and more than 5.000 delegates from 140 countries will participate. The programme also includes more than 130 sessions on 12 topics, including human rights, trade, climate change, new ideas for development, inclusion and equality. Jean- Claude Juncker, European Commission President, Sam Kutesa, President of the 69th United Nations Assembly, and several commissioners related to cooperation and development, will attend. The agenda includes several sessions with a focus on the right to health, right to life and sustainable healthcare, three key aspects shared by IF`s work.

The International Federation for Spina Bifida and Hydrocephalus (IF) works since 1998 in developing countries. The Spina Bifida and Hydrocephalus Interdisciplinary Program (S.H.I.P.) is its main programme in Kenya, Zambia, Malawi, Tanzania, Uganda and Sudan. S.H.I.P. aims to ensure lifelong care by collaboration between a network of hospitals, rehabilitation centers and Disabled People Organization (DPOs).

The goal of IF is to improve the quality of life of people with Spina Bifida and Hydrocephalus (SBH). IF organizes trainings and develops materials on topics that are identified by its local partners.  "The aim is to translate the knowledge we have in Europe, and what we have learned through our local partners, into realistic solutions in developing countries", says Van Diest, IF´s Programme Manager International Solidarity.  "Timely access to good quality healthcare is essential. Without medical intervention, most of the children with SBH would die", says Van Diest.

Newborns with SBH require immediate surgery to prevent further damage to the spinal cord and brain. However, surgery is only the first step; children and adults with SBH will need access to healthcare and follow up throughout their lives.

This is why IF implemented S.H.I.P, together with its local partners. The aim is to set up a programme where the hospitals, rehabilitation centers and the DPOs work together to ensure lifelong care with regular follow up for people with SBH. S.H.I.P starts with diagnosis and identification, then referring the children to the hospital where they will get the most appropriate surgery. IF provides around 3.000 shunts per year to developing countries, a lifesaving device in the treatment of Hydrocephalus. Next, the follow up continues in the rehabilitation center and through the DPOs for physiotherapy, occupational therapy and training on continence management, skin care and other skills and knowledge that are needed. DPOs play a key role throughout the programme. Currently there are nearly 24.000 children in the programme.

Most children born with SB suffer from incontinence. This causes health problems such as urinary and skin infections or kidney failure.  It can also lead to social exclusion. Therefore, IF has developed a continence management programme for its projects in developing countries. More than 1.800 parents, children and youth were training in continence management in 2014 and more than 4.500 children and youth participated in this programme. In addition to its training programme, IF provides reusable catheters and cones so children can control their incontinence. "Continence management is the most important step towards inclusion for children with Spina Bifida" says Van Diest.

Read Romani Josef's story

Knowledge is key. IF collaborates with local support groups where parents, children and people with SBH meet to share experiences and information, and parents can be trained in the care of their children. In 2014, there were 146 parents meetings and more than 5000 parents were reached. Also around 30 youth meetings were organised and almost 400 people attended.  "There is no better role model than a 20-year-old boy with SB, who is going to university and who talks to the new parents who maybe thought there was no hope for their children. No doctors can do that. By providing hope, hospitals see support groups as important partners".  

IF works to reduce the incidence of neural tube defects (NTDs) such as SB by supporting trainings in food fortification. The organization also provides funds to its projects in developing countries to supply Folic Acid tablets to women of childbearing age. Folic Acid supplementation and fortification are the only scientifically proven methods of primary prevention for NTDs. During 2014, more than 1 million tablets were distributed in IF's projects and around 15.000 women in Africa were reached.