If you want to write a blog post, volunteer as a media spokesperson, join as an industry supporter, or want to collaborate with us, please get in touch. If you require information or support about a rare or genetic condition, please read the patient information and contact our parent charity, Genetic Alliance UK.
Please note that staff are not medically trained and cannot provide advice on specific medical conditions/possible diagnosis.
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 info@raredisease.org.uk 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.
If you are a journalist intending to feature rare diseases in your work, please don’t hesitate to get in touch with us at info@raredisease.org.uk.
If you are a patient or family member who would be willing to share your story for media purposes please contact us at info@raredisease.org.uk.
