Rare Voices

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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 2019, 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
 

It is still early days in the development of the Rare Voices and how often the meetings will run will be dependent on the group. You can read the notes from our previous meetings 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

Helpline

 

Our helpline is open 9-5pm

Monday-Friday:

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

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Coronavirus:

information

and resources for young people

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