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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); pcc@pcc-ni.net

 

 

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

 

Carers UK

https://www.carersuk.org/help-and-advice/health/looking-after-your-health/coronavirus-covid-19

Carers NI

(part of Carers UK)

https://www.carersuk.org/northernireland/news-ni/carers-ni-and-carers-trust-ni-joint-statement-on-covid-19-coronavirus

Contact for families with disabled children

https://contact.org.uk/advice-and-support/coronavirus-information-for-families-with-disabled-children/

Carers Trust

https://carers.org/guidance-coronavirus

Family Fund

https://www.familyfund.org.uk/help-and-support-coronavirus

Carer co-ordinators in the Health and Social Care (HSC) Trust

 

South & East Belfast Area

Margaret McDonald

  1. mcdonald@belfasttrust.hscni.net
  2. calvert@belfasttrust.hscni.net

 

North & West Belfast Area

Lynne Calvert

 

Western Health & Social Care Trust

Cathy Magowan

Cathy.magowan@westerntrust.hscni.net

 

South Eastern Health &Social Care Trust

Joan Scott

  1. scott@setrust.hscni.net
  2. mccrink@southerntrust.hscni.net

 

Southern Health & Social Care Trust

Patricia McCrink

 

Northern Health & Social Care Trust

Anne Cummings

Anne.cummings@northerntrust.hscni.net