THIS PAST YEAR HAS BEEN INCREDIBLY DIFFICULT FOR EVERYONE, BUT ESPECIALLY FOR PEOPLE AFFECTED BY RARE CONDITIONS.
Many have reported that their routine rare condition healthcare has been interrupted, hospital care has been severely affected and some experienced disruption in accessing their usual medication.
These, and many other challenges, combined with the uncertainties and anxieties caused by the threat that Covid-19 poses on vulnerable people, has had a profound effect on their overall wellbeing and mental health.
By donating to Rare Disease UK you are helping us to continue our dedicated programme of support for our community. This includes:
- Running a dedicated Covid-19 Information Hub: https://covid-19.geneticalliance.org.uk/, with up to date information and useful resources for everyone affected by genetic, rare and undiagnosed conditions during the pandemic.
- Weekly virtual community check-ins for all organisations and groups supporting rare disease communities to discuss the most pressing issues.
- Research into the effects of living with a rare condition.
- Policy and public affairs activities, shaped by our community’s most pressing needs.
- General support for people affected by rare conditions, their families, carers and organisations that support them.
- Raising awareness about what it means to live with a rare condition among the general public.