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"Working together we can secure the best use of scarce expertise and resources, maximising the health gain for all those with rare conditions" Alastair Kent OBE, Chair of RDUK


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Benefits of Joining RDUK

Increase the pressure on governments and policy makers

By joining RDUK you will increase the support for an effective strategy for rare diseases in the UK. The more people there are supporting this work, the greater the likelihood that it will be recognised as a serious health priority by the health departments in the UK and a strategy will be successfully developed and implemented to improve the lives of the thousands of people living with a rare disease. Help us to build the pressure that will lead to positive change for you or your members!

Help inform a strategy for rare diseases

RDUK is working hard to ensure that a UK strategy for rare diseases is comprehensive and accurately reflects the needs of the rare disease community. To do this we need your input to help identify what changes are needed and what systems should be put in place to improve the current situation. Joining RDUK will provide you with opportunities to give your opinion, provide evidence and experiences, participate in knowledge-gathering events and ultimately help to shape the UK strategy for rare diseases.

Let us represent your views and campaign on your behalf

RDUK is able to campaign for issues on your behalf and represent our members’ interests in key political debates. By joining RDUK you can be sure that you or your members are represented on the broad political issues that affect you. You can be as involved as you like in this process, allowing you to contribute your ideas and opinions to help shape our campaigns or enabling you to go about your daily life or concentrate on issues more specific to your members.

Support and profile raising

RDUK are keen to support initiatives and organisations that improve the lives of those affected by rare diseases. Joining RDUK will enable us to raise awareness of your organisation and the services that you can offer to your members, helping you to find new members and reach out to an even wider audience. RDUK has 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 you with an enquiry you may have.

Keep on top of rare disease news

When you join RDUK you will automatically receive our monthly 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 members to help you raise awareness of any activities, events or new initiatives that you have.