TAMS recognises the multifaceted challenges many primary caregivers and children face at the beginning of the school year. As such, in addition to the mast cell diseases information on the TAMS website, and connecting with our online Patient and Carer’s Facebook Support Groups, TAMS has developed the following list of resources to assist you and your family this year.
The Mast Cell Disease Society
Printable and digital download/share friendly resources that may be suitable for adults, caregivers, teens and young adults trying to educate peers, communities, schools and families about their Mast Cell Disease (MCD) diagnosis.
MastoKids
A United States Not-For-Profit (NFP) supporting children with mastocytosis and their caregivers. Resources include an early childhood-friendly letter and poem, respectively that can be customised for early education and primary schools, friends and families. Those introducing MCDs with cutaneous (skin) symptoms may also value printing out TAMS Spotted Quoll colouring page or sharing it with educators.
The School Toolkit
A UK NFP initiative providing information on how Ehlers-Danlos Syndrome (EDS) and similar conditions affect children in schooling, resources including on how to request reasonable accommodations, and educating the school community about a child with EDS. Created by The Ehlers-Danlos Support UK and The Hypermobility Syndromes Association.
Livewire
A safe online community for those 12 – 20 living in Australia or New Zealand who have a chronic health condition, serious illness or disability, and their siblings. Powered by the Starlight Foundation.
Allergy and Anaphylaxis Australia
Offers resources, including Allergy Aware: Best Practice Guidelines Schools, and a sample letter designed for Principals to communicate about a child’s allergy needs with the school community, as well as resources for those 13 – 18 navigating allergy and anaphylaxis.
Allergy 250K
Age-appropriate and fun resources and education for teens and young adults (11 – 25) living with severe allergies, including resources on safely navigating festivals, parties, university, dating and travelling. Funded by the Australian Federal Department of Health.
Australian Disability Clearinghouse on Education and Training
Provides information on disability specific adjustments for those with Multiple Chemical Sensitivity, disability planning for post secondary education, tertiary transitioning for those on the Autism Spectrum, and more. Funded by the Australian Federal Department of Education.
Sydney Children’s Hospital Network
Offering educational fact sheets, and other support for caregivers of children with chronic illness.
Association for Children with a Disability
National NFP with information and support to help primary caregivers supporting a child with disability. Offers resources on early childhood, teen years, the National Disability Insurance Scheme, and on advocating for a disabled child, managing and supporting children’s behaviours, and more.
Skylight
New Zealand NFP available to help people through difficult times. Their website offers resources for parents and primary caregivers of chronically ill children.
KidsHealth
Joint initiative of the Paediatric Society of New Zealand and Starship Foundation (NZ) offering information on assessment for support, including financial support, or other services for chronically ill children and their family/whānau.
Services Australia
Provides information on the yearly Child Disability Assistance Payment and Carer Allowance which Australian residents receive if they are legal guardians of children under 16 with a disability or serious illness.
Raising Children Network
Parenting website with information on topics including guides for caregivers supporting children on the Autism Spectrum, with ADHD, sensory issues and disabilities. Funded by the Federal Department of Social Services.
MyTime
For parents and primary caregivers of children with chronic medical conditions, disabilities, and those on the Autism Spectrum can connect, unwind and share ideas and experiences.
Amaze
NFP offering information for individuals on the Autism Spectrum, as well as caregivers supporting children on the Spectrum. Information is available on the diagnosis process, behaviour support services, finding an appropriate therapist, social scripts, and resources for teens and how to support them with issues such as romantic relationships, puberty and sexuality.
