Support and resources
This page brings together resources that may help with day-to-day life, education, healthcare, advocacy, and family wellbeing. If you have discovered a resource that has been particularly helpful, especially when supporting or advocating for your child and family, please get in touch so we can continue to grow this collection for the benefit of the wider community.
Supporting family and caregiver wellbeing
Contributions are sought from parents and other unpaid caregivers about resources, education, reading, services and personal strategies that have supported your wellbeing while navigating DEE-SWAS and related conditions.
School and education resources
Resources to help explain your child's diagnosis and needs to educators.
Support organisations - global
Organisations around the world that support children and families living with DEE-SWAS, EE-SWAS, CSWS, ESES and LKS.
Video presentations and podcasts
Expert educational videos, conference presentations, webinars and podcasts.
