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NIH Grant to Support a Multi-Center Initiative to Advance Research, Treatment for Leukodystrophies – Read the full article here

Bluebird bio Presents Updated Data from Phase 2/3 Clinical Study of Lenti-D™ Gene Therapy for Cerebral Adrenoleukodystrophy (CALD) at the 13th European Pediatric Neurology Society (EPNS) Congress –  Read the full article here

We have a valuable and most important Post Stroke Qualitative Study Questionnaire for those who have had a CADASIL related Stroke and one for those who have had General related Stroke. This study is being carried out by the ACSN in conjunction with our partner the University of Technology Sydney. Click here for more information.


The Australian CADASIL Support Network (ACSN) is an exciting initiative to connect patients, families and leading clinicians as we work towards our mission: achieving improved health outcomes for those of you with CADASIL and like disorders, and to provide a network of ongoing, mutual support, whether you be a patient, family or carer.

You, the patient, will guide the directives in the health outcomes you want to see and help to increase disease awareness within and without the medical community. In addition, along with you, we seek to drive and encourage the translation of scientific knowledge into the most up-to-date and highest level of clinical best practice available.

The ACSN arose from a collective recognition that collaboration between patients, their families, clinicians, and research scientists are essential if we are to achieve these desired outcomes.


[/vc_column_text][vc_column_text]Please take a moment to take one of our surveys to assist our research:


CADASIL PATIENT SURVEY[/vc_column_text][/vc_column][/vc_row][vc_section][vc_row][vc_column][ut_gallery_slider type=”carousel” number=”3″ slides=”2732,2730,2727,2731″][/vc_column][/vc_row][/vc_section][vc_section][vc_row][vc_column][vc_column_text]Welcome

You are likely entering this site because you have received some very unpleasant news about a family member or a friend or you are seeking some personal knowledge about the group of disorders known as the Leukodystrophies.
We greet you as an organisation that has personal understanding and experience of having had an immediate loved one with a Leukodystrophy.

As you explore this site, it is our intention that you find accurate information that you need; be comforted by the support that other families can offer to you and your family and be encouraged by our globally recognised research programs, resources and family support that we will deliver to you.

We are in partnership with the leading Leukodystrophy scientific, medical and support authorities around the world and we offer you the benefit of this powerful knowledge. In doing so, we also extend to you a comforting hand as you continue your walk with Leukodystrophy.

Leukodystrophy Defined

Leukodystrophy is a disorder determined by the following criteria:

  1. It is genetic
  2. It has a progressive nature
  3. It predominately affects the white matter (myelin) in the central nervous system (CNS) and peripheral nervous system (PNS)
  4. The myelin fails to develop or is destroyed by the dysfunction of a protein or enzyme

It results in devastating symptoms that lead to a dramatically shortened lifespan.

This website is continually being updated and is in the process of being finished.[/vc_column_text][/vc_column][/vc_row][/vc_section]