Information for patient organisations

We are an alliance of over 200 patient organisations providing information and support for patients affected by genetic and rare conditions. We support and develop communities by providing an excellent range of services to our members, new groups and everyone affected by these conditions. Many, but not all, of these pages, are only available to our members. You can read more about the benefits of membership in our Membership Pack, or get in touch with our Membership Engagement Manager, Jurrat Hasan, to discuss further.

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