Young adults discussion group

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

This group is a chance to look at ways that will help young people to live life to their full potential and how the MPS Society can work with you to provide it, 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 which was online via Zoom in September, identified key topics for the group to begin to focus on. Below are the topics that the group have decided upon:

  • Employment and Employability

  • Life skills and Independent living

  • Benefits and financial advice

  • Education, Exams and University

  • Mental health

  • Practicalities of living with a disability


Next steps
The six topics were put to a vote on which area to cover first. Employment ranked highest and will be covered in the next two meetingsIt is still early days in the development of the Young Persons Advisory Group and how often the meetings will run will be dependent on the group.​ The next online meeting is scheduled for the start of 2020. This will be the second meeting for employment and you can read the notes from the first meeting in the dropdown menu below.

How do i get involved?
If you are aged between 15 and 30 years and would like to join the next online meeting, please contact the team. We will make sure to answer any questions and arrange for dial in details to be sent to you. 

Useful links


For transition

For support events

For befriending



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?

If you are aged between 15 and 30 years and would like to join the next online meeting contact the team



and resources for young people

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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MPS Society

MPS House, Repton Place

White Lion Road, Amersham

Buckinghamshire, HP7 9LP

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

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© 2019 Society for Mucopolysaccharide Diseases