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We urgently need an “Underlying Conditions and Coronavirus Treatment Portal” to increase survival rates for vulnerable groups and to preserve NHS resources from being spent treating easily avoided complications.

  • Many people with rare diseases have specific risks that could be triggered by the infection, or treatment, of Covid-19.
  • The Government must create an “Underlying Conditions and Coronavirus Treatment Portal” to provide clinicians with quick notes on the implications of the addition of any disease with Covid-19.
  • Providing specific, easily accessible, and quickly evolving data will help avoid secondary implications and decrease mortality rates. This will save NHS resources, freeing them for others in need.
  • Clinicians, particularly emergency and drafted in clinicians, cannot be expected to know the latest information on the 6,000 known rare conditions[i]. This makes a portal essential.
  • Rare diseases are individually rare but collectively common. Around 3.5 million people in the UK suffer from a rare condition[ii].

Advice for patients with rare diseases

SarcoidosisUK suggests patients carry a letter on them with information on their condition(s) and prescription(s). SarcoidosisUK have created a letter for patients that also includes information on trigger issues for those with sarcoidosis.

Until such time as the Government creates a portal SarcoidosisUK urges all healthcare charities to do the same for their patients.

 From Henry Shelford, SarcoidosisUK Chairperson and CEO:

“It is essential that the Government use this window of time before an outbreak to create coronavirus Covid-19 treatment information for those with pre-existing conditions.

We know that those with pre-existing conditions are more at risk than others of dying. The 3.5 million people in the UK with one of the over 6,000 identified rare diseases are especially at risk. It is impossible for every clinician to know everything about every rare disease. We are therefore imploring the Government to use this time to create a Covid-19 Disease Portal with summaries on what implications to be aware of. Avoiding triggering secondary issues will save lives and save NHS resources. Sharing information is essential now.”

Definition of sarcoidosis:

Sarcoidosis is a condition that can affect any part of the body, most often the lungs. Clumps of cells called ‘granulomas’ stop the affected organ(s) working properly. There is no known cause or cure. It affects everyone differently and the symptoms depend on the organ(s) affected. In most cases, sarcoidosis can be managed by medication and goes away after a few months or years. In the long-term it can lead to serious organ damage and can be fatal.

Notes for editors

 

[i] https://www.nature.com/articles/s41431-019-0508-0

[ii] https://www.raredisease.org.uk/what-is-a-rare-disease/

[iii] https://bjgp.org/content/bjgp/63/617/663.full.pdf

[iv] https://www.europeanlung.org/assets/files/en/publications/sarcoidosis-en.pdf

[v] https://www.eurordis.org/about-rare-diseases

[vi] https://www.eurordis.org/about-rare-diseases

[vii] https://www.raredisease.org.uk/what-is-a-rare-disease/

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