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 07739 286397.
We want to hear from you!
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.
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.
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.
Donate and fundraise
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.
If you are a journalist intending to feature rare diseases in your work, please don’t hesitate to get in touch with us at [email protected].
If you are a patient or family member who would be willing to share your story for media purposes please contact us at [email protected].
A rare disease is defined by the European Union as one that affects less than 5 in 10,000 of the general population. There are between 6,000 and 8,000 known rare diseases. Our information page on rare disease contains further information. Our list of supporters provides an insight into the range of rare diseases, please be aware that this it is not a comprehensive list of all rare conditions.
WHAT IS THE UK STRATEGY FOR RARE DISEASES?2018-05-16T13:35:00+01:00
The UK Strategy for Rare Diseases is a six year vision for rare disease diagnosis, care, treatment and research in the UK incorporating 51 commitments that must be achieved by 2020. Systematically implemented across the four nations of the UK it can deliver high quality healthcare to patients and families with rare diseases.
WHERE CAN I FIND OUT MORE ABOUT MY CONDITION?2018-05-16T13:35:23+01:00
Patients tell us that one of the hardest things about having a rare condition is that often their doctor may not have much information about the condition. We have answered a number of key questions about finding information and support.
Additionally our parent organisation Genetic Alliance UK can point you in the direction of patient groups with more information, or help you search for medical literature alone. Please note that they are not medically trained (and so cannot offer you medical advice about your condition, or the management and treatment of it).
SHOULD I JOIN GENETIC ALLIANCE UK?econochie2019-05-20T10:24:19+01:00
If you are a supporter of Rare Disease UK, but not a member of our parent charity Genetic Alliance UK, you might want to consider joining. Membership is only open to patient groups, not individuals, and in joining you would:
Be part of a united and respected voice for everyone affected by genetic conditions and have a say in what Genetic Alliance UK’s message is.
Get priority notification and access to Genetic Alliance UK events including: information workshops, our annual conference and opportunities to shape health policy by contributing to charters and manifestos.
Have access to over 20 years of experience in policy and campaigning work, information production and patient support
If you are interested in joining please visit the Genetic Alliance UK join page for further information, or to fill in an application form.