SOS Network Assistance Incubator for Spina bifida
Outcome:
empowerment of vulnerable groups
City (headquarters):
Katowice
Voivodeship (headquarters):
śląskie
Dates:
31-12-2022 - 31-12-2022
Status:
in progress
Project cost:
72 710 EUR
Funding:
69 710 EUR
Outreach:
nationwide
Types of activities:
counselling, self-organization / self-help, networking
Target groups:
children, caregivers of dependent persons, persons with medical conditions

According to the Polish Register of Fetal Defects (Polski Rejestr Wad Wrodzonych), 100-120 children are born with spina bifida each year. Poland is one of few countries in Europe that has not adopted a national spina bifida plan. For patients, this means there is no reliable information, information is provided in a chaotic manner, and endless hospitalization that excludes them from the community in which they function.
The aim of the project is to enable people with spina bifida to become self-reliant by creating a network of coordinated care: educational, medical, and mental support. In the SPINA Workshop (Pracownia SPINA), unique workshops will be conducted on urinary tract hygiene and bowel hygiene for families, and workshops and psychological counselling will be provided for young people and schoolchildren. We will also organize training for medical personnel, and two conferences for people receiving care, parents, and medical personnel on the latest options regarding treatment. The SOS Program (Program SOS) (visible information about the services available and contact details) will be introduced in medical centers through Poland. We will publish an updated Information Pack (Zeszyt Informacyjny) with a compendium of information on methods of treatment, access to services, and rights of persons who have spina bifida.
We will create a network of volunteers throughout Poland (parents of older children with spina bifida or adults who have the condition) who will be able to provide support for families with disabled children once they have received the appropriate training (15 training sessions and three meetings on psychology and education on medical issues).
Support will be provided for 50 families (130 people) and 30 volunteers will be trained. We will disseminate information about the illness in 40 medical centers, and also publish 2000 copies of the Information Pack.

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