Local COVID-19 & rare disease research
COVID-19 is having a major impact on rare disease communities
Many local rare disease communities have been in touch seeking advice and information to help manage their rare diseases during this COVID-19 pandemic. We are working with a range of stakeholders, local and international partners to conduct robust research that provides evidence to help inform policy and practice.
COVID-19 support information for Northern Ireland
This is an extremely anxious and worrying time for everyone, struggling to find the correct advice and support can make it even more difficult. The following list of resources was put together in good faith with the intention of sharing some useful links during this particularly challenging 2020 COVID-19 pandemic. The Queen’s Rare Disease Team are not providing direct advice on Covid19, but we have listed some online resources below which you might find helpful in these challenging times.
The Northern Ireland Rare Disease Partnership (www.nirdp.org.uk) provides links to many other information sites and free resources which you may find useful.
The British Society for Genetic Medicine has also put this information together: www.bsgm.org.uk/news/general-advice-for-patients-with-rare-or-undiagnosed-genetic-disorders-re-covid-19/
Public Health Agency: https://www.publichealth.hscni.net/covid-19-coronavirus
Northern Ireland Direct:
Information on COVID-19: https://www.nidirect.gov.uk/campaigns/coronavirus-covid-19
Information on Shielding: https://www.nidirect.gov.uk/articles/guidance-shielding-extremely-vulnerable-people
The Department of Health has also launch a Covid-19 app – further information is available here: health-ni.gov.uk/news/dedicated-northern-ireland-covid-19-app-launched
To download the app – search for Covid-19 NI on the Apple app store or on google
Regularly updates including the daily dashboard are accessible here: https://www.health-ni.gov.uk/topics/doh-statistics-and-research/covid-19-statistics
Northern Ireland Statistics and Research Agency figures: https://www.nisra.gov.uk/statistics/ni-summary-statistics/coronavirus-covid-19-statistics
UK government advice: https://www.gov.uk/coronavirus
Patient and Client Council: https://patientclientcouncil.hscni.net/
Patient Client Council on T: 0800 917 0222 (9am -5pm Mon – Fri); firstname.lastname@example.org
For carers in particular: those who are carers are now faced with the additional challenge of continuing their caring role while ensuring they comply with the guidelines set by the Government.
Carer specific information
(part of Carers UK)
Contact for families with disabled children
Carer co-ordinators in the Health and Social Care (HSC) Trust
South & East Belfast Area
North & West Belfast Area
Western Health & Social Care Trust
South Eastern Health &Social Care Trust
Southern Health & Social Care Trust
Northern Health & Social Care Trust