How can I contribute as a patient?

There are several ways you can get involved with our registries and offer your support as a patient.

Registering yourself as a patient in the Core Registry

Entering patient details into the Core Registry is usually initiated by your doctor, the specialist who looks after patients with a rare condition. If you would like your own details to be entered in the Core Registry then please provide details of the Core Registry to your doctor. After you have given consent to your doctor to share your data and your email address you will receive an email with instructions how to access your record (video instructions coming soon) in the Core Registry. Alternatively, you can contact us at and we will help you to get your details into our Core Registry. Please also have a look at our Q&A Patient page to help answer any question you might have.

Get involved in a Study Group as a patient representative

We have several different Study Groups which are composed of experts from different disciplines including patient representatives. Each group brings together their expertise to accomplish its objectives. These might include developing research projects within the registries such as developing condition specific modules. If you would like to take part in a Study Group (average involvement depending on the study group would be 2 online meetings of 90 minutes a year) and give your insight as a patient, please contact us at

Interested in helping us? Share your expertise

We can use people who are willing to do a job whether it’s fundraising, communications (social media, writing articles for newsletters, further developing our webpages), translations, taking photos at events or which we can use for our website/socials, giving feedback on our website or registries platform, secretarial tasks or help hosting events.

Help to expand our network

Please spread the word about our registries to your doctors and community.