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! 

REPUTABLE on-line resources for 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

The Lancet COVID-19 Resource Centre

New England Journal of Medicine COVID-19 updates

Please contact advocacy@rdi.ie if you know of other reliable sources of useful information for the rare disease community.