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…

Genetic Alliance UK, as a small charity, and therefore our key projects Rare Disease UK and SWAN UK, will be severely impacted over the coming months. Whilst we are working to mitigate these risks, the impact on our income and cash flow will be swift and severe.

Without urgent intervention, many smaller charities that provide vital services to beneficiaries will simply not weather this storm. The loss of services, support, advocacy and stimulus for rare disease research will be catastrophic. Within months we are likely to see major and direct impacts on the patient community, including loss of access to vital services and support for patients and families. Unless we can mitigate the risks collectively faced by our community, rare disease advocacy in the UK will be decimated, setting the community back decades.

This is clearly a time for the rare disease community to work together but the window of opportunity is frighteningly short. 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.