SUPPORT GROUPS, SUPPORT PROGRAMS & PATIENT ORGANISATIONS

Neuromuscular 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: neuromuscularwa.org.au

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/

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

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.

For more information visit the national website cmtaustralia.org.au or email cmt-wa@cmt.org.au

Myositis Association Australia’s support groups provide a space where people suffering from a form of Myositis can come together, exchange ideas in a supportive manner and gain help and assistance from other members.

The national organisation’s website includes a resource hub accessible to members, and information about myositis and how to access support. Most states and territories have volunteer run support groups who meet regularly.

To find more information visit www.myositis.org.au or email mail@myositis.org.au

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/

Rare Voices Australia (RVA) is the national peak body for Australians living with a rare disease, and leads the collaborative development of the Rare Awareness Rare Education (RARE) Portal and RARE Helpline services.

The RARE Helpline provides timely access to information and assists to connect people with health services and professionals to support their condition management. This service is available 9am to 5pm (eastern states time) by calling 0499 549 629.

The RARE Helpline is complimented by the online service directory of information about rare conditions and support services, known as the RARE Portal. To search the portal, visit the website: rareportal.org.au

For more information about RVA, visit their website: rarevoices.org.au

The Neurological Council of WA (NCWA) delivers community neurological nursing and healthcare navigation in the community, both in the metro and regionally. The neurological nurses offer services prior to receiving a formal diagnosis, or post diagnosis.

They provide advocacy, education of the healthcare system, support with completion of applications for funding (e.g. NDIS), care management and clinical assessments. The NeuroCare, community neurological nursing is available face-to-face in most regions, and via TeleNurse if face-to-face is not possible.

More information can be found at their website: ncwa.com.au

Reimagine Australia formally know as 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. Reimagine Australia 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: re-imagine.com.au

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

Carer Gateway is a national program providing services and supports for unpaid carers in their caring role. This program provides access to supports including;

• in-person and online peer support groups

• tailored support packages to help access planned respite, transport services, and more

• in-person and phone counselling

• in-person and online self-guided coaching

• online skills courses to support your wellbeing as a carer, and understanding of responsibilities relating to the carer role

• access to emergency respite

To access this Carer Gateway call 1800 422 737 Monday to Friday between 8am and 5pm. To find out more, visit carergateway.gov.au

Young carers are people up to 25 years old 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 Network directs young carers to local support organisations, provides information about financial supports, and information resources available in a number of languages to help young carers handle their extra responsibilities.

More information can be found at their website: youngcarersnetwork.com.au

Siblings Australia offer supports for siblings of people with disability of all ages from young, teens, to adults with resources and opportunities to connect with others. Additionally, Siblings Australia runs programs and develops information for parents to support their children who are siblings.

The SibChat closed group for adult siblings allows the sharing of experiences and tips between siblings across Australia. Online and in person sibling peer support groups are also held to allow a like-minded community to connect in a non-judgemental space. These peer support groups are a part of the SibConnect program, available for adult siblings of a person with disability.

To find out more visit their website: siblingsaustralia.org.au

This Perth-based program supports grieving children from ages 5-17 following the death of a parent, primary care-giver or sibling. Lionheart Camp for Kids hold a number of camps for different age groups, with separate parent and child based programs focusing on the specific needs of the group.

In addition to camp programs, Lionheart Camp for Kids provides ongoing programs and events throughout the year to support grieving families, and have a range of resources available on their website.

For more information visit lionheartcampforkids.com.au