Due to the current COVID-19 pandemic Genetic Alliance UK has made the decision to close our offices and work remotely – this includes Rare Disease UK. If you have a query, please email [email protected] as our phone lines are not being monitored.
If you have a press enquiry please ring our press officer on 0300 124 0441.
Anyone with an interest in rare diseases can support the work of Rare Disease UK. This includes patients, family members, patient organisations, clinicians, researchers, academics and industry. It is completely free to join for everyone other than industry. Please visit the join us page to support our work.
Through your fundraising efforts and donations we can help advocate for rare disease patients and their families, campaign for better healthcare and health outcomes, and we can ensure patients have access to the care and treatment they need. Thank you for thinking about donating to support our work.
We aim to help raise awareness for all rare conditions. Rare Disease Day is an annual event which provides the rare disease community across the world the opportunity to increase awareness of rare diseases. The day is coordinated by Eurordis at an international level, and by Rare Disease UK at a national level. You can help us raise awareness by getting involved in our Rare Disease Day activities. Additionally we raise awareness throughout the year by encouraging patients and families to share their experience, by organising events and through promoting condition specific awareness raising activities organised by our supporters.