Michelle A Farrar
Biographic Data
| ID | 5574859 |
|---|---|
| NAME | Michelle A Farrar |
| GIVEN NAMES | Michelle A |
| FAMILY NAME | Farrar |
| SIGNATURE | FARRAR M A |
| AFFILIATIONS | Discipline of Paediatrics and Child Health University of New South Wales Medicine and Health Sydney New South Wales Australia |
| ORCID | 0000-0002-4472-0902 |
| VERIFIED | Yes |
| TOTAL WORKS | 3 |
| TOTAL CITATIONS | 0 |
| AUTHOR COUNT | 3 |
| EDITOR COUNT | 0 |
| FIRST PUBLICATION YEAR | 2022 |
| LATEST PUBLICATION YEAR | 2026 |
| H-INDEX | 0 |
There's huge value in just bringing people together”: A rare disease organisation community of practice for integrated rare disease care
Background: The value of lived experience and advocacy for health system and policy improvement is well understood. However, there are capacity constraints for people living with a rare disease and the organisations that represent them. Although individually rare, collectively the >7000 known rare diseases impact approximately 6% of the population. Delayed diagnosis, limited treatment options and disease complexity are commonly experienced. Build…
‘High hopes for treatment’: Australian stakeholder perspectives of the clinical translation of advanced neurotherapeutics for rare neurological diseases
INTRODUCTION: Advanced therapies offer unprecedented opportunities for treating rare neurological disorders (RNDs) in children. However, health literacy, perceptions and understanding of novel therapies need elucidation across the RND community. This study explored healthcare professionals' and carers' perspectives of advanced therapies in childhood-onset RNDs. METHODS: In this mixed-methodology cross-sectional study, 20 healthcare professionals …
‘Advocacy groups are the connectors’: Experiences and contributions of rare disease patient organization leaders in advanced neurotherapeutics
INTRODUCTION: Biomedical progress has facilitated breakthrough advanced neurotherapeutic interventions, whose potential to improve outcomes in rare neurological diseases has increased hope among people with lived experiences and their carers. Nevertheless, gene, somatic cell and other advanced neurotherapeutic interventions carry significant risks. Rare disease patient organizations (RDPOs) may enhance patient experiences, inform expectations and…
No prominent works on this page.
‘Advocacy groups are the connectors’: Experiences and contributions of rare disease patient organization leaders in advanced neurotherapeutics
INTRODUCTION: Biomedical progress has facilitated breakthrough advanced neurotherapeutic interventions, whose potential to improve outcomes in rare neurological diseases has increased hope among people with lived experiences and their carers. Nevertheless, gene, somatic cell and other advanced neurotherapeutic interventions carry significant risks. Rare disease patient organizations (RDPOs) may enhance patient experiences, inform expectations and…
‘High hopes for treatment’: Australian stakeholder perspectives of the clinical translation of advanced neurotherapeutics for rare neurological diseases
INTRODUCTION: Advanced therapies offer unprecedented opportunities for treating rare neurological disorders (RNDs) in children. However, health literacy, perceptions and understanding of novel therapies need elucidation across the RND community. This study explored healthcare professionals' and carers' perspectives of advanced therapies in childhood-onset RNDs. METHODS: In this mixed-methodology cross-sectional study, 20 healthcare professionals …
There's huge value in just bringing people together”: A rare disease organisation community of practice for integrated rare disease care
Background: The value of lived experience and advocacy for health system and policy improvement is well understood. However, there are capacity constraints for people living with a rare disease and the organisations that represent them. Although individually rare, collectively the >7000 known rare diseases impact approximately 6% of the population. Delayed diagnosis, limited treatment options and disease complexity are commonly experienced. Build…
Genomics and Rare Diseases (3 works) · Health care (2 works) · Medicine (2 works) · Mental Health and Patient Involvement (2 works) · Psychology (2 works) · Psychosocial (2 works) · Qualitative research (2 works) · Thematic analysis (2 works) · Action plan (1 works) · Amyotrophic Lateral Sclerosis Research (1 works)