The "NCL-Gruppe Deutschland" (NCL-Group Germany) is a parent-support organisation representing the interests of children and families affected by NCL.
Our main objectives are
- to help parents find the best medical treatment and highest quality support for their kids
- to bring parents together so they can share thoughts, feelings and experiences
- to give advice to the families affected
- to organize holiday camps for the kids to provide respite for the families for a short time and to allow the kids to socialise
- to organize meetings and seminars for parents, children, doctors and assistants
- to advance the medical research of NCL
- to raise awareness of the disease with public authorities
The NCL-Group was founded in 1989, emanating from the VSS-Group (Vogt-Spielmeyer-Stock) which was confined to Northern Germany.
Currently, it consists of about 400 registered members. The Board consists of 8 members, all working voluntarily. In addition, 4 regional groups (North, West, East and South/Central) have been created to provide more local support for families.
During our weekend seminars - as well as at regional meetings - parents have the opportunity to exchange experiences. This enables families to acquire new strength and courage for the tough, everyday life with an NCL child. In addition, this mutual support is important when it comes to new legal regulations or handling issues with the public authorities.
We have had good experiences with the following regular events that happen on a yearly basis:
- annual meeting for all members, taking place for one weekend every autumn. While the children have their own program of events and are taken care of by supporters, parents are free to join workshops, attend talks given by scientists and medical professionals, and exchange experiences with other families
- regional meetings – organised by each regional-group, e.g. Summer Fete, Christmas Party
- weekend seminars for mothers, fathers or siblings, taking place in a different city every year
- holiday camps for the affected kids during the Easter and Summer holidays, lasting 10 to 12 days
- weekend seminars for caregivers