Support Groups, Support Programs & Patient Organisations
Muscular Dystrophy WA
Muscular Dystrophy WA provides individualised information and active support services for all those impacted by any of the many forms of muscular dystrophy and neuromuscular conditions. Services provided include activities such as camps and school holiday programs, education programs, community support programs, as well as advocacy and counselling services.
More information can be found at their website: mdwa.org.au
Disability Support Guide
Disability Support Guide is a website that provides information about the NDIS and support services and providers available across Australia.
The website lists advisors, equipment and technology, therapists and specialists and in home and community support.
More information can be found at: https://www.disabilitysupportguide.com.au/
People with FSHD & MD WA
A peer support network that holds bi-monthly friendly and supportive lunch gatherings for persons with all types of muscular dystrophy and their families. They also offer occasional workshops to keep members up to date with critical support and services information.
People with FSHD & MD WA have a very active Facebook page, which can be found at: facebook.com/groups/fshdandmdwa
You can also visit their website at: fshdandmdwa.com/home.html
Spinal Muscular Atrophy (SMA) Australia
Australia’s largest support association for persons living with Spinal Muscular Atrophy, and their families and carers. SMA Australia offers information on the disease, equipment, peer support and advocacy as well as information about up-and-coming research and treatment initiatives.
More information can be found at their website: smaaustralia.org.au
A local WA support group run by volunteers to assist those diagnosed with Charcot Marie Tooth Disease (Hereditary Sensory Motor Neuropathy) and sitting under the umbrella of the national Charcot Marie Tooth Association of Australia
The group aims to provide information and support to local members and holds three to four meetings each year.
Save our Sons Duchenne Foundation
A national organisation with a mission of enhancing the quality of life of children with Duchenne muscular dystrophy by raising awareness and funding scientific research as well as clinical trials.
Save Our Sons Duchenne Foundation fund clinical trials, specialist nurses in children’s hospitals and equipment to enhance children’s quality of life.
More information can be found at their website: saveoursons.org.au
A global research foundation focused on finding treatments and cures for FSHD (facioscapulohumeral muscular dystrophy). The foundation is entirely not-for-profit and donates all funds to current and future medical research grants. They hold regular fundraising events.
More information can be found at their website: fshdglobal.org/role-and-impact
Genetic and Rare Disease Network (GaRDN)
GaRDN aims to connect, inform, support and empower families impacted by all rare genetic diseases, including muscular dystrophy by promoting and facilitating support groups.
The GaRDN website provides a (non-exhaustive) list of medical professionals who specialise in working with people with muscular dystrophy – simply search ‘muscular dystrophy’ in the search-bar.
More information can be found at their website: geneticandrarediseasenetwork.org.au
Early Childhood Intervention Australia (ECIA)
ECIA is the peak national organisation promoting the interests of young children with disability. They facilitate a child’s development from early childhood to ensure that they are able to take part in everyday activities and be included in family and community life. ECIA can put you in contact with a number of professionals who work as a team around your child, providing therapy/education, counselling, service planning and coordination and potentially assistance to accessing services such as kindergarten and child-care.
Services are tailored to meet the individual needs of the child and are focused on supporting the child in their natural environments and their everyday experiences and activities.
More information can be found at their website: ecia.org.au
The WA representatives of the ECIA can be contacted through email at firstname.lastname@example.org.
Carers Association of WA
A not-for-profit, community based organisation dedicated to improving the lives of family carers living in Western Australia. They work in active partnerships with carers, persons with care and support needs, health professionals, service providers and the wider community to achieve their goals.
They provide many services including support events, as well as links to other charities that may be of support to carers, and information on government support and respite services.
More information can be found at their website: carerswa.asn.au
Young Carers WA
Young carers are people under the age of 26 who help look after a family member who needs extra support at home. This may include young parents, young extended family members, siblings and friends of someone with a disability, as well as their children if they have any.
Young Carers WA offers support, information and various resources to young carers, as well as schools. Their aim is to help young carers handle their extra responsibilities, and make sure that schools and other institutions properly accommodate their caring role.
More information can be found at their website: youngcarerswa.asn.au
Young Carers Bereavement Program (Lionheart Camp for Kids)
This Perth-based program supports grieving children from ages 5-12 following the death of a parent, primary care-giver or sibling. The Lionheart Camp for Kids is a two-day camp for both children and their parents, with separate parent and child based programs focusing on the specific needs of the group.
In addition to camp programs, Lionheart provide ongoing programs and events throughout the year to support grieving families.
For more information email email@example.com.
Commonwealth Respite and Carelink Centres
Commonwealth Respite and Carelink Centres (CRCCs) aim to contribute to the support and maintenance of caring relationships by facilitating access to information, respite care and other support appropriate to carer’s needs and circumstances, and the needs of the people they care for.
The national network of CRCCs provides a link to carer support services and assists carers with options to take a break through short-term and emergency respite. Where appropriate, a CRCC can help with putting in place regular respite for a carer to reduce the need for unplanned and emergency respite. CRCCs also provide information about carer support services in their local area.
CRCCs provide free and confidential information on local carer support, disability and community services.
The nearest CRCC can be contacted by phoning 180 052 222 during business hours or 1800 059 059 for emergency respite support outside standard business hours.