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The Association has gained interest from families and communities around Australia to support its mission and many initiatives for support have been carried out such as new publications in the area of schooling and physiotherapy for these children. As Batten disease is a relatively rare disorder in the community, it is essential that an Association such as this exists for affected families in all States to provide the network of understanding, care and practical help that families need to be able to physically, emotionally and financially cope with the demands of an affected child [in some cases, families have more than one affected child]. The Association performs a critical activity for the Batten disease community in Australia and provides the following support avenues:
Click here to view our Library and educational information, newsletters and other helpful literature .
Membership and Ongoing Support
Helping families to overcome their fears and uncertainties; to hopefully find an acceptance and ultimately to be grateful for the positives. Sometimes it is knowledge that is needed, sometimes emotional support but most often it is simply that families know that there is someone here, someone who has been through all the rollercoaster experiences of caring for an affected child.
Click here to become a member and follow the Batten Disease cause. We encourage you to join.