The Rare Reality of Covid-19

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2 July 2020

The rare community is under immense pressure due to the Covid-19 pandemic.

Our new report out today shows access to appropriate support, information, care and treatments ha become more difficult and levels of social isolation have been increased.

Results from the EURORDIS Rare Barometer Covid-19 Experience Survey and from our weekly community meetings during the months of April, May and June 2020 demonstrate that:

  • Routine rare condition healthcare has been interrupted – 66% of respondents say that the interruption has been probably or definitely detrimental to their wellbeing.
  • Hospital care is severely affected – 80% of our community receive care in hospitals, but 40% reported closure of units and for 16% necessary equipment for their hospital care was absent because it was needed for Covid-19 care.
  • Access to medicines is being disrupted – 1 in 5 people affected by a rare condition have experienced disruption to access to their usual medication.
    Support for people living with rare conditions has been slashed – support from neighbours, family, psychological services, home care, respite care and day care have all been reduced or taken away.
  • People living with rare conditions are scared and worried – more than 40% of respondents thought Covid-19 posed a very high level of threat to themselves or the person with a rare condition they cared for.
  • There has been a sudden switch to remote consultations – delivering mixed results for people living with rare conditions – this has been a good stopgap for many, but much of the change has been without consultation with the community.
  • Access to PPE has been difficult – only a small minority of people living with a rare condition had adequate access to PPE for the person they care for, for themselves or for their social care professionals.
  • Local authority support for people in the home is no longer an obligation – many children have lost all or a portion of their education support.
  • Tests have not been available for those who need them – only 9% of people affected by a rare condition who thought they should have been tested for Covid-19 actually accessed a test.

The sudden and, for many, devastating changes to our community’s lives came quickly and out of necessity. The relaxation of lockdown and changes to healthcare can be performed with greater consideration and consultation. It is crucial that further shocks to our community be avoided to prevent additional serious impact to people living with rare conditions.


To mitigate the negative impact of Covid-19 on people living with rare conditions and prepare the UK better to support our community in the case of another pandemic we recommend:

Continuing to deal with Covid-19

  • In monitoring the spread of Covid-19, data should be collected that will enable assessment of the impact, in terms of morbidity and mortality, on people living with rare conditions.
  • People living with a rare condition who have a legitimate reason to ask for a test for Covid-19 (either for diagnosis or in order to asses future risk) should be given priority access.
  • Access to PPE (personal protective equipment) should be guaranteed for people with rare conditions and those providing care and support to rare condition patients.
  • When a vaccine or other prophylactic treatment becomes available, patients with rare conditions should be among those with priority access, provided their health condition allows.

Successful transition from crisis state

  • For those with rare conditions that confer high risk from Covid-19 who wish to continue protecting themselves through isolation, the support mechanism established should continue to be provided – no one should be forced to stop their protective isolation.
  • A clear and short timetable for the reintroduction of services should be published to give people living with rare conditions clarity as to when they can expect a full service from the NHS.
  • The provision of remote consultations should be continued. Care should be taken to integrate telemedicine into routine care practice with the necessary clinical assurance and data protection safeguards.
  • Schools and educational facilities should be supported to ensure that they have the necessary flexibility to respond to individual needs and to adapt practices for children with rare conditions.

Learning for the future

  • The challenges and failures in delivering letters giving shielding advice should be examined, and actions should be taken following this analysis to ensure the UK is able to rapidly provide tailored public health advice to specific populations with specific conditions.
  • The development of the new UK framework for rare diseases has been delayed by this crisis – it is now more necessary than ever. Learnings from this crisis should be incorporated into the new framework before the end of 2020.

Read the full report here.