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Rare Metabolic Disease - Patient or Carer Experience Survey

1 September 2021

Hi all,
The below study aims to understand the current strengths and weaknesses in the healthcare system and will collect input from the metabolic healthcare workforce (e.g. clinicians, nurses, dietitians, genetic counsellors, diagnostic scientists) patients, carers and families navigating the healthcare system. Developing a national rare disease workforce strategy that responds to current and future demands is a key priority of the National Strategic Action Plan for Rare Diseases – and it needs the patient voice and expertise.
Please consider taking part.
**DEADLINE EXTENDED**
Rare Voices Australia (RVA) has engaged Equity Economics and Development Partners to undertake a rare metabolic disease workforce study. This study aims to understand the current strengths and weaknesses in the healthcare provided to metabolic patients in Australia. The study will collect input from the metabolic healthcare workforce (e.g. clinicians, nurses, dietitians, genetic counsellors, diagnostic scientists) patients, carers and families navigating the healthcare system. Developing a national rare disease workforce strategy that responds to current and future demands is a key priority of the National Strategic Action Plan for Rare Diseases – and it needs the patient voice and expertise.
As part of this study, we are conducting a Patient or Carer Experience Survey to understand the lived experiences of people accessing the metabolic healthcare workforce. The Survey will close at 17:00 (AEST) on Tuesday 7 September 2021.
Please share this survey with your network so we can reach as many people as possible. This important work will create evidence to build on strengths and fill gaps in metabolic healthcare for all Australians living with a rare disease.