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.

Why Join Us?

Increase the pressure on governments and policy makers

By joining Rare Disease UK you will support our work to campaign for health departments across the UK to implement the UK Strategy for Rare Diseases. The more people there are supporting this work, the greater the likelihood that it will be recognised as a serious health priority and patients and families living with these conditions will have equitable access to effective services. Help us to build the pressure that will lead to positive change!

Representing your views and raising awareness

Rare Disease UK is able to campaign and represent the views of the rare disease community in key political debates. By joining Rare Disease UK you can be sure that your interests are represented on the broad political issues that affect you. You can be as involved as you like in this process, helping to shape our campaign or concentrating on the issues that matter to you.

Rare Disease UK is keen to support initiatives and organisations that improve the lives of those affected by rare diseases. Joining Rare Disease UK will enable us to raise awareness of your organisation and the services that you can offer. We also have access to a vast knowledge base that we have built up through our interactions with patients, families, patient organisations and other professionals – let us share this with you and see if we can help.

Keep up-to-date with rare disease news

When you join Rare Disease UK you will automatically receive our fortnightly updates. These include all relevant rare disease news stories, as well as updates on our activities and ways you can get involved. We are also happy to include stories from our supporters to help raise awareness of any activities, events or new initiatives that you have.

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