Coronavirus (Covid-19) and rare genetic disorders - The British Society for Genetic Medicine

About

The British Society for Genetic Medicine provides a forum for professionals involved in genetics and genomics as a clinical service and research.

As an umbrella organisation, our membership includes a wide spectrum of clinical, laboratory and research disciplines, not only in specialist genetic services but throughout the health professions.

The Joint Committee on Genomics in Medicine

The Joint Committee on Genomics in Medicine is a tripartite committee of the BSGM, RCPath and RCP, with representation from other professional bodies and patient organisations. It provides a unified forum to co-ordinate activities across a wide spectrum of organisations, particularly to promote and maintain the highest standards of practice in clinical and laboratory applications of genetics in medicine and to co-ordinate advice on service issues and workforce planning.

For its remit, membership, and minutes, please visit

Here are information leaflets on Covid-19 to support patients with and carers of rare genetic disorders.

General advice regarding Coronavirus (COVID-19) for patients with rare genetic disorders

Here are six leaflets:

1: An overview of Coronavirus (Covid-19) and rare disease

2: What makes a person more vulnerable to Covid19?

3: Understanding your risk from Covid19 if you have a rare disease

4: What should I do if I am an extremely vulnerable person?

5: What to do if you have symptoms that could be due to COVID-19?

6: I am worried about letting my carer/my child’s carers into my home –what shall I do?

The information sheets on COVID-19 for people with rare disorders, including rare chromosome & gene disorders are now available in BSL (British Sign Language).

These can be viewed here

These information leaflets written to provide help with the issue of shielding for vulnerable patients were the work of a group of Colleagues, led by Lara Menzies and Elizabeth Forsythe SpRs at GOSH but also Kelly Kohut, Chair of the Lead GCs group and Nicola Taverner Chair of the AGNC. They were ably supported by Emily Clarke at Genetic Disorders UK.

Further information on the shielding process is available here