Health Professional Register

The Osteogenesis Imperfecta Society of Australia has been providing a support to families and individuals living with Osteogenesis Imperfecta for over 40 years.  We are a voluntary organisation, whose board is made up of over 50% of people with OI and the remainder of the board members are parents of children with OI.  We currently have over 220 members across Australia, provide newsletters, facebook groups and hold biennial conferences.  During the conference in Melbourne last year a key need was identified, the ability to easily find  medical and allied health professionals who are knowledgeable in caring for and treating people with OI in their local areas.

To that end we researched ways of achieving this goal and identified that the Genetic and Rare Diseases Network (GaRDN) in Perth were in the process of building a national register of health professionals and researchers with specialised knowledge and experience in rare and genetic conditions.  Details are outlined below.

Seeking health professionals and researchers with specialised knowledge and experience in rare and genetic diseases

The Genetic and Rare Disease Network in Western Australia is compiling a register of health professionals and researchers who have specialist knowledge and experience in a particular rare and/or genetic disease.

We anticipate this register could create networking opportunities for health professionals and researchers, and improve access to specialist knowledge.

The register is available within the Health Professionals page on our website https://gardn.org.au/health-professionals-register/

In addition, the National Organization for Rare Disorders (NORD) may include consenting health professionals in their rare disease expert list.

We would be grateful if you would complete the survey (link below) that enables health professionals and researchers to self-nominate an area of specialised knowledge and experience in genetic and rare diseases.

Please feel free to distribute the survey link to colleagues.

Survey link

https://www.surveymonkey.com/r/J7XPP6Q

Any queries or feedback, please email hello@gardn.org.au