The Ravenscroft research team are committed to meaningful engagement with consumers, patients and families; and the broader community. 

 

The Neuromuscular Genetic Diseases Consumer Reference Group was established at the Harry Perkins Institute.  Members of the Ravenscroft group work closely with the CRG to inform research priorities, develop grant applications and design materials for patient recruitment (e.g. patient information and consent forms).

 

In addition, members participate in and speak at events organised in partnership with patient groups including the international Scientific & Family Conferences for congenital myopathies (https://www.scifam.info) and Research Evenings hosted by NeuromuscularWA (https://neuromuscularwa.org.au).

 

We are also engaged with RareVoices Australia (https://rarevoices.org.au) via the RD Collective initiative and the Myositis Association Australia (https://myositis.org.au).

 

Where needed we have also engaged with research buddies to inform specific aspects of projects within the research program. 

 

We thank all consumers who have contributed to and/or participated in our research, for their time and generosity.