Important Information for England

General Information for England

Key national information sources

NHS information for people with genetic, rare and undiagnosed conditions that may be at higher than average risk from Covid-19 is here. Please be aware that this includes people affected by a broader range of conditions than those affected by conditions that reduce the effectiveness of our immune system. If you do not know whether you are at higher than average risk from Covid-19, then you need to consult our condition specific guidance, your GP, or your clinical specialist.



Alongside the communication from the NHS the Government has a scheme to register those who need extra support. Whether or not you have received a letter from the Government, if you believe you or a family member are part of the group of people who are extremely vulnerable to Covid-19, you may register here. If you have not been contacted by the NHS yet, you should also contact your GP or specialist to register yourself.

This system will connect you with a Local Support System, which will make sure those individuals self-isolating at home and who are without a support network of friends and family will receive basic groceries. Community pharmacies will support those who need help getting their medicines delivered.


Shielding and Vulnerable People

People identified as belonging to one or more of the at-risk groups will be contacted by their GP practice, specialist or both, strongly advising them to stay at home for a period of at least 12 weeks. If you are contacted it is vitally important for your own protection that you practice shielding. Guidance on how to achieve this shielding is here.

NHS Volunteer Responders in England can help with shopping, a prescription collection or a friendly chat. People needing support can self-refer if they think they meet the qualifying criteria. Carers can make a referral for someone they care and for themselves, if this support helps them continue in their caring role. To find out more about the service click here. To self refer telephone:  0808196 3646.



Mencap have pulled together resources and advice for carers who may be affected by Covid-19. The government has published guidance on who is eligible for getting tested for Covid-19. The priority list now includes unpaid carers.  The full guidance can be found here.


The economic and social implications of the coronavirus crisis are already having profound impacts on individuals and families affected by genetic, rare and undiagnosed conditions, as well as on the voluntary organisations and charities that support them. The impact of Covid-19 on the charity sector is devastating. Many charities are struggling to support their communities and wondering if they will survive. We are working hard to support all our members and the wider genetic, rare and undiagnosed community but we share their concerns - please help us help them.