What We Do
The organisation exists to provide information, support and advocacy to individuals and families affected by leukodystrophy, to raise awareness of this group of conditions, and to encourage leukodystrophy-related research.
Receiving a diagnosis of leukodystrophy can be a challenging and stressful time. Due to the rarity of the condition, it can be difficult to access accurate and relevant information & supports; the symptoms can be quite vague and associated with other disorders, so diagnosis is often difficult and time-consuming. It is common for individuals & families to feel a sense of shock, isolation, and fear of the unknown during this time. Depending upon the leukodystrophy, the rate of progression can vary significantly from one person to another.
Leukodystrophy Australia supports many individuals and families, who may be at any stage of their journey with leukodystrophy, from awaiting confirmation of diagnosis, through dealing with the health and socio-emotional impact of the condition, to bereavement and beyond.
In addition to working with individuals and families impacted by leukodystrophies, the organisation also works closely with the wider community, local and overseas Medical & Scientific communities, having also established a National Clinical and Research Network of local experts with interests in the field of leukodystrophies.
Leukodystrophy Australia recognises that managing a leukodystrophy is not just about the clinical side of things – everybody’s needs are different. There are therefore many considerations, including the need for understanding physical and emotional requirements, financial factors and others. We provide the following types of supports & services:
Emotional and practical support to individuals and families
Information and advocacy
Professional liaison with local services (with consent)
Up-to-date information via our website, newsletters, and social media
Linking families with similar conditions or experiences, for peer support
Raising funds to enable us to offer a range of supports to individuals and families, including access to equipment, services and financial aid
Supporting research, community education and awareness-raising
Help to obtain Genetic Counselling
Our Family Advocate program services members Australia-wide. We aim to support individuals and families impacted by leukodystrophy, by ensuring their needs are met by their local Case Management and extended services in a timely and effective manner and that they are treated with respect and dignity.
Leukodystrophy Australia receives no Government funding. Instead the organisation relies on the generosity of donors, subscribers, fundraisers and philanthropic organisations to maintain the level of support that we know individuals & families affected by this group of conditions need and deserve.
Vision & Mission
Leukodystrophy Australia is the national peak organisation representing all people impacted by Leukodystrophy. We share in the same vision to source a cure for Leukodystrophy worldwide. We collaborate internally and externally with numerous stakeholders to advance the care of our members.
Those living with leukodystrophy, through knowledge and support, lead their best lives.
We assist in empowering people throughout their Leukodystrophy journey and beyond. We offer support, foster member connections, provide service linkages, education, advocacy and promote current trends in treatments and research.
- That individuals impacted by Leukodystrophy are empowered to live their life journeys with support.
- Maximizing the quality of life for those impacted by Leukodystrophy.
- Parents or other informal supports are supported in their caring roles.
- Advocacy is provided at a micro, meso and macro level.
- The service operates in an effective, efficient, transparent and accountable manner.
Leukodystrophy Australia are committed to the following values:
- Respecting and recognising our members’ abilities, qualities, achievements and their lived experiences.
- The rights and choices of members to have a say in their health and wellbeing.
- Collaboration with health professionals and other service providers to assist members in reaching their full potential.
- Rigid processes by which members, donors, beneficiaries and their financial contributions assist in sustaining service delivery.
- Current multidisciplinary research in the hope for improved outcomes for members and finding a cure for Leukodystrophy.
- Professionalism in all activities and a team environment.
- Service delivery informed by the principles of social justice, accountability, transparency, equality and equity.