Young adults advisory board

This is your chance to generate ideas that will help individuals with MPS, Fabry or related diseases in your age group.

This group is looking at services and resources that will help young people to live life to their full potential and how the MPS Society can work with you to provide them, in a way that suits you. This is more than addressing health issues, it’s all support you may need from adult services to employment issues to, well, you tell us!

The first meeting was held in September and identified key topics for the group to begin to focus on. These were:

  • Employment and Employability

  • Life skills and Independent living

  • Benefits and financial advice

  • Education, Exams and University

  • Mental health

  • Practicalities of living with a disability

The six topics were then put to a vote on which would be discussed first, employment ranked highest and will be covered in the next two meetings.

It is still early days in the development of this project and how often the meetings will run will be dependent on the group.

Useful links


For advocacy

For adults and young people

For parent support



Our helpline is open 9-5pm


0345 389 9901

Out of hours support line open

5pm-10pm Monday-Friday and weekends: 07712 653 258 or

Want to get involved?

Complete the form below to send a message to the team

We are the only registered charity providing professional support to individuals and families affected by MPS, Fabry or a related disease in the UK.

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Registered Charity No.1143472 & SCO41012. Registered Company No. 7726882  

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MPS House, Repton Place, White Lion Road, Amersham, Buckinghamshire, HP7 9LP

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0345 389 9901