Rare is many. Rare is over 300,000 people in Ireland, 30 million people in Europe, 300 million people worldwide. Rare is strong. The rare disease community joins together across borders and diseases to raise awareness and advocate for equity. The rare disease community supports all involved in delivery of care at this particularly challenging time. Rare is proud. Show your support for the rare disease community with pride!
HSE
Summary of cocooning measures applicable to ALL vulnerable groups
Advice on minding your mental health
Advice (from NCCP) on caring for someone that is immuno-compromised
Reliable, up-to-date information on COVID-19 is also available from the following sources on Twitter:
- HSE Ireland – @HSELive
- HSE Health Protection Surveillance Centre (HPSC) – @hpscireland
- Department of Health – @roinnslainte
- Dr Tony Holohan (Chief Medical Officer) – @CMOIreland
Other reputable sources of factual COVID-19 information
Guidance and resources from other patient facing organisations
List of disease specific patient organisations
Family Carers Ireland advice on what a temporary carer may need to know in the event that the primary carer is unable to provide care.
Care Alliance advice and sources of support for carers in Ireland
Guidance and resources from other organisations
The Community Call – Advice & Contact Information county by county on trustworthy sources of local community support.
Glao an Phobail – Comhairle agus Eolas Teagmhála do do Chontae
Additional sources of trustworthy scientific information
BMJ’s Coronavirus (COVID-19) Hub
Please contact advocacy@rdi.ie if you know of other reliable sources of useful information for the rare disease community.
