Thanks to the solidarity of the Norwegian and Swedish member associations, RHF and RBU, as well as the Belgian NGO Child-Help, IF has been able to develop structural and valuable partnerships with local partners in East Africa. These partners have the capacity to treat and follow-up, both medical and socially, children with Spina Bifida and Hydrocephalus. These partners also have capacity to help the parents start building parent support groups. An overview of the official partners in the South:
- Mbale (Uganda): CURE Children's Hospital Uganda
- Mbarara (Uganda): Organized and Useful Rehabilitation Services (OURS)
- Kampala (Uganda): Katalemwa Cheshire Homes Kampala
- Kampala (Uganda): Central Uganda Spina Bifida and Hydrocephalus Association (CU-SBH)
- Gulu (Uganda): AVSI Gulu
- Uganda: Spina Bifida and Hydrocephalus Association Uganda (SHAU)
- Kijabe (Kenya): BethanyKids at Kijabe Hospital (BKKH)
- Kenya: Spina Bifida and Hydrocephalus Association Kenya (SHAK)
- Lusaka (Zambia): Beit CURE International Hospital
- Zambia: Zambian Association for Hydrocephalus and Spina Bifida (ZAHSB)
- Blantyre (Malawi): Queen Elisabeth Central Hospital, in cooperation with Beit CURE International hospital
- Malawi: Parents Association for Spina Bifida and Hydrocephalus (PASHL)
- Moshi (Tanzania): CCBRT CBR Kilimanjaro in cooperation with KCMC
- Arusha (Tanzania): Arusha Lutheran Medical Centre (ALMC)
- Tanzania: Association for Spina Bifida and Hydrocephalus Tanzania (ASBAHT)
- Sudan: Spina Bifida Federal Association
In addition, IF maintains a network of contacts in and with other African nations in the areas of exchange of information and training. IF also collaborates with new partners in Latin America and Asia. With the experience we have gained in Africa, IF can really support these new efforts.
The CURE Children's Hospital of Uganda has become the referral hospital for Spina Bifida and Hydrocephalus in Uganda. It works closely together for follow-up of the children operated with OURS in Mbarara, Katalemwa Cheshire Homes in Kampala, and other partners Uganda. Focus has been on treatment of and research on Hydrocephalus. CURE Children's Hospital of Uganda became the expert on alternative surgery of Hydrocephalus with ETV, making a natural bypass to drain the fluid in the head through endoscopic surgery. Derek Johnson Talks About Hydrocephalus from CURE Video on Vimeo.
OURS was founded in 1995 and has a 20 bed rehabilitation centre. It is running as a CBR Program (community based rehabilitation program) to identify, assess and rehabilitate children living with different types of disabilities. Children and their parents receive medical, social and therapeutic rehabilitation services, and many community activities are organized. OURS is a Centre of Excellence on lifelong follow up after children have received surgery at the CURE hospital in Mbale.
Katalemwa Cheshire Home is a disability rehabilitation centre in Kampala. Spina Bifida and Hydrocephalus children are identified and prepared for necessary surgery. Katalemwa has a structural cooperation with the CURE project in Mbale for shunting, ETV and closures of the back. After the surgery, the centre provides follow-up. Katalemwa Cheshire Home has expertise in technical aids, producing wheelchairs, sitting aids etc.
BethanyKids at Kijabe Hospital is the children's ward of Kijabe hospital. It has a 60+ bed capacity and has become the referral hospital in Kenya for neurological patients. The hospital has 15 outreach clinics as far as Dadaab (North of Kenya, border with Somalia). 90% of their patients have Spina Bifida and Hydrocephalus.
The Beit CURE hospital in Lusaka is one of the few hospitals in Zambia able to adequately address the surgical needs of the disabled children in the country. The hospital houses 45 patient beds in the children's ward. The neurosurgeon has been trained at the CURE Children's hospital in Mbale, Uganda and is helping many children with Hydrocephalus by using the ETV/CPC technique.
The country of Malawi has few physicians. For some time, clinical officers have been "the backbone of the health-care system in Malawi" (to quote paediatric surgeon Professor Eric Borgstein). Children with Hydrocephalus used to only have access to treatment at Queen Elizabeth Central Hospital (QECH) in Blantyre. Through partnership, treatment is now available in several regional hospitals as well.QECH is the largest referral hospital of the country and has more than 1000 beds. Follow up is being organized in collaboration with the Beit CURE hospital in Blantyre.
Located on the slopes of Mt Kilimanjaro in northern Tanzania, CBR Kilimanjaro offers rehabilitation and preventive services for the disabled in their local communities. Kilimanjaro CBR began operating in 1996 and covers mostly the greater Kilimanjaro region. CBR Kilimanjaro prepares and refers children who need surgery to Kilimanjaro Christian Medical Centre in Moshi.
Since 2010, ALMC is offering services for children with SBH in the Arusha region. It has a 75 bed capacity and is working closely with Kilimanjaro CBR to provide the necessary follow up.
ASBAHT was formed in 2001 with the aim to bring together parents and caretakers of children with SBH. This parent support group mainly works on advocacy and lobbying, and reaching out to society to raise awareness. It works closely with the Muhimbili Orthopaedic Institute (MOI).
ZAPDD is a NGO established in 1997 by the parents of people with developmental disability. In 2011, two new parent support groups for SBH were established within the ZAPDD structure covering both islands of Pemba and Unguja. It works closely with the Mnazi Mmoja hospital. Spina Bifida Federal Association, Sudan. This parent support group started in 2002 and covers the Khartoum area, where it works on awareness raising and advocacy. They lobby for fortification with folic acid as primary prevention of spina bifida. They work closely with the Soba hospital, and other hospitals.
Parent groups within the IF projects
IF's International Solidarity program places great emphasis on encouraging parents to come together and meet each other as well as empowerment of the family of the child with a disability. Research shows that informed and involved parents are an important factor in the decline of the complication rates if they are active partners in the rehabilitation process of their child.
There are active support groups in all partner countries. IF's International Solidarity program also supports many initiatives in other countries that do not have official IF projects. The parent groups from Sudan (Spina Bifida Federal Association), Tanzania (ASBAHT), Kenya (SHAK), Central Uganda (CU-SBH) and Zambia (ZAHSB) have become official members of IF. This is an important step towards their sustainability and independence. The input of the Norwegian organisation for Spina Bifida and Hydrocephalus (RHF), the Swedish association RBU and the Belgian NGO Child-Help has been - and continues to be - crucial in creating and empowering new groups in Africa.