References
- Ending the Wait Report, Rare Diseases Ireland, March 2023
- HSE Review of the Clinical Medical Workforce in Ireland 2019
- Rare Barometer Report 2022 – Ireland, EURORDIS
- Rare Reality Report, Rare Diseases Ireland, January 2022
- Rare 2030.EU Recommendations, February 2021
- https://www.rarediseasesinternational.org/living-with-a-rare-disease/
- Census 2016, CSO Report: https://www.cso.ie/en/census/census2016reports/
Calculation
– Number of families = 1.2 million
– Number of people living with a rare disease = 300,000 (ref #4)
– 300,000/1.2 million = 25% - https://baebies.com/the-power-of-rare-disease-awareness/#:~:text=The%20low%20numbers%20of%20people,not%20see%20their%20fifth%20birthday.
- An estimate of the cumulative paediatric prevalence of rare diseases in Ireland and comment on the literature, Gunne et al. Eur. J. of Hum. Gen. 30, 1211-1215 (2022)
Calculation
– Percentage of Bed Days used by RD patients = 51.9%
– Percentage of RD patients among cohort = 4.2%
– Ratio of Bed Days to RD patients = 51.9%:4.2% = 12.35:1– Percentage of Bed Days used by non-RD patients = 48.1%
– Percentage of non-RD patients among cohort = 95.8%
– Ratio of Bed Days to non-RD patients = 48.1%:95.8% = 0.5:1– Time spent by RD patients in hospital V’s non-RD patients = 12.35/0.5 = 24.7 times
- A retrospective review of the contribution of rare diseases to paediatric mortality in Ireland, Gunne et al. Orphanet J. Rare Dis. (2020) 15:311
