Ages 12-18

Join NextGen!

NextGen is our programme providing dedicated support to young people (aged 12-18) living with an Inherited Metabolic Disorder. We do this through:

Community: Through social media, our newsletter, and magazine, NextGen will provide a social community for you to come together and get to know each other, share experiences, have your voice heard and have some fun along the way!

Tools & Resources: We’re developing materials across a broad range of topics to help you manage your condition and deal with the challenges you might face in areas such as education, the transition to adult care and much more, and want to put your needs and feedback at the centre of this.

Research & Influence:
It’s our job to make sure the voices of patients are heard in the development of new treatments for Inherited Metabolic Disorders, and in the care and information you receive. We believe that young people are a vital part of this process and will invite our NextGen community to take part in research we undertake, as well as to give us your feedback and tell us what matters to you in the resources we create.

Events: We’ll be providing specific workshops and activities for young people at our conferences and patient days, as well as your own dedicated events.

Sign-up here to become a member today!

Not a member but like to be kept updated? Sign up to our NextGen newsletter here:


Are you a parent of a young person and want more information about NextGen? Visit this page for information for parents:

Are you living with an Inherited Metabolic Disorder, aged 19-25 and would like to help shape young people’s experience of growing up with an Inherited Metabolic Disorder? Visit this page to hear about our Delegate programme: