News - 14.10.2024
VR Supports Einstök Börn
The VR Board has approved a grant of 6 million ISK to Einstök Börn (e. Unique Children in Iceland), a support group in Iceland for children with rare diseases. The role of the organization is to advocate for the interests of the children and their families and provide them with assistance. Einstök Börn was founded nearly three decades ago by parents, for parents. Today, the organization supports approximately 800 families.
VR has long supported various causes related to social responsibility, and this project is part of that commitment. Caring for a child with a serious or chronic illness inevitably affects parents' participation in the workforce and their involvement in society in general. The pressure on individuals and families is significant and can have lasting effects. VR aims to support an organization that provides such critical support to parents and families.
A large part of the work done for Einstök Börn is carried out by volunteers, with only one professional staff member employed by the organization. The scale of their work has grown considerably, with an average of 10–14 children joining Einstök Börn every month over the past year. The organization offers a wide range of services, including extensive counseling and professional assistance to parents and guardians across the country, as well as help with gathering information. It also provides counseling and education to other family members and raises awareness in the community about rare diseases and syndromes, among other activities.
Einstök Börn relies on community support to cover operational costs, as public funding is extremely limited. For families and relatives of children with rare diseases and syndromes, having access to the professional services provided by the organization is essential. In light of this, the VR Board calls on the government to ensure long-term funding for Einstök Börn. The Board believes it is vital that the services provided by Einstök Börn remain accessible to the parents who need them.
The photo shows Ragnar Þór Ingólfsson, Chairman of VR, and Guðrún Helga Harðardóttir, Managing Director of Einstök Börn, at the grant handover. Board members Þórir Hilmarsson, Svanhildur Ólöf Þórsteinsdóttir and Diljá Ámundadóttir Zoega were involved in the decision to award the grant on behalf of the Board.
