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Evaluating the impact of COVID-19 on rare disease support groups



An online survey was conducted during Summer 2020 with rare disease individual or collaborative groups to discover the impact they have experienced as a result of the current COVID-19 pandemic.  The survey asked questions about the current services provided, changes in contact and demand for services, how they as a group have adapted to the new demands, and the longer-term implications they anticipated for their group. 


Six rare disease groups completed the online survey.  The groups were established between 1963 to 2010 and operate within Northern Ireland, Republic of Ireland or United Kingdom wide. 


Groups have experienced an increase in calls to their helplines as well as followers to their websites and social media feeds.  Groups are no longer meeting in person and so online meetings, webinars and zoom chats have become a regular occurrence.  Fundraising was highlighted as an area of concern for such groups.  This research highlights the support individual and collaborative groups require and raise awareness of the value they bring to many.


Several  findings from the survey are illustrated below:


Common concerns discussed on groups’ helplines in the month prior to survey.


The most lasting positive and negative impacts from COVID-19 pandemic on the group and people supported.

Rare disease charity pos and neg impacts re covid

The pandemic has significantly changed the way in which these groups operate and the services they can provide.  The results of the survey highlight the challenges individual and collaborative groups are facing during this pandemic and help to identify what support should be put in place to enable them to sustain their much-valued service through these trialling times.


The associated data has been published by OPENICPSR, Covid 19 Data Repository and is available to view here: Evaluating the impact of COVID-19 on rare disease support groups. (


The final version of our peer-reviewed, COVID-19 charity rare disease data note is available to view here: Evaluating the impact of COVID-19 on rare disease support groups | BMC Research Notes | Full Text (

McMullan, J., Crowe, A.L., Bailie, C. et al. Evaluating the impact of COVID-19 on rare disease support groups. BMC Res Notes 14, 168 (2021).


JM is supported by funding support from the Medical Research Council – Northern Ireland Executive support of the Northern Ireland Genomic Medicine Centre though Belfast Health and Social Care Trust [MC_PC_16018].  AC and CB are supported by a Department for the Economy PhD studentship awards. 



Photo: AJ McKnight
AJ McKnight
Centre for Public Health, QUB
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