Meet Ruby, a beautiful 3 year old who was diagnosed with hypomyelination with atrophy of basal ganglia and cerebellum, or H-ABC, shortly after her birth. H-ABC
Leukodystrophy Resource & Research Organisation
The LRRO’s mission is to maximise Health Care Resources, advance the world’s leading Research and to provide the premium support for all the Australasian Leukodystrophy families with the outcome being a cure. In fulfilling our mission our objectives are…
- To provide charitable services for the relief of sickness, suffering, distress, misfortune, disability or helplessness of people, and to work proactively to enhance the physical, emotional and spiritual wellbeing of people, in the Leukodystrophy and like Leukoencephalopathy communities of Australasia, without discrimination due to age, sex, race, ethnic background, religion, political beliefs or marital status
- To provide broad-based and relevant information for the support of people suffering from Leukodystrophy and like Leukoencephalopathies, to their families, their carers, the public at large including health professionals.
- To actively promote and fund Global research into Leukodystrophy and like Leukoencephalopathies in order for it to benefit the Australasian families with the ultimate aim to find a cure
- To build Global relationships with all like minded charitable organisations from around the world with the common goal to spread awareness, raise money to advance research for treatments and a cure and to provide support, direction and information to affected persons and their families.
- To grow the data base of known affected families in the Australasian region and thus support a larger number of otherwise unassisted families
- To increase public awareness of Leukodystrophy and like Leukoencephalopathies
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Connect with Leukodystrophy Resource & Research Organisation
Patient Worthy Posts on Leukodystrophy
According to a story from abc.net.au, ever since Massimo Damiani was first diagnosed with a leukodystrophy, his parents, Sally and Stephen, have been committed to
A new treatment under development has produced promising results in patients with blood cancers and is now being tested in inherited metabolic disorders, reports Financial
Losing a child has to be one of the most heart-wrenching experiences a family can encounter, yet losing a child when it could have been