Yvonne Zurynski1
Biographic Data
| ID | 6778005 |
|---|---|
| NAME | Yvonne Zurynski1 |
| GIVEN NAMES | Yvonne |
| FAMILY NAME | Zurynski1 |
| SIGNATURE | ZURYNSKI1 Y |
| VERIFIED | No |
| TOTAL WORKS | 1 |
| TOTAL CITATIONS | 0 |
| AUTHOR COUNT | 1 |
| EDITOR COUNT | 0 |
| FIRST PUBLICATION YEAR | 2026 |
| 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…
No prominent works on this page.
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…
Action plan (1 works) · Disease (1 works) · General partnership (1 works) · Genomics and Rare Diseases (1 works) · Health care (1 works) · Health Systems, Economic Evaluations, Quality of Life (1 works) · Integrated care (1 works) · Mental Health and Patient Involvement (1 works) · Rare disease (1 works) · Strategic planning (1 works)