Rare Voices

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



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

Employment and Employability

Employment has been split into two meetings first on 'Getting work and staying supported at work' and 'Knowing your rights'

Getting work and staying supported at work with Xanthe Whittaker Post-doctoral researcher at University of Leeds

What type of job role is right for me?
Before you start to look for employment try to answer a few questions on your working enviroment preferences. These questions could be things like:

  • What hours of work would you want?
  • Would it be full time or part time?
  • Would you want to work from home or become self employed?
Consider what type of job role would best suit your personality, skill set and knowledge and what role you believe you would be the best candidate for. Why not ask your close friends and family to help you.

It is also beneficial to research the types of job roles and job specifications to check their criteria and find out what that organisation can offer you. If you are still in education or just starting employment you may have other support available to you that is worth looking into. They may have apprenticeships or career advisers or your employer may offer mentoring.
If you are not currently in education or starting employment you may want to look in at your local library or job centre for opportunities and check out the helpful resources below for further guidance. Helpful resources Scope have a helpful list of Disability Friendly Employers vmock analyse your CV and give out advice on how to improve it. Glassdoor is a platform that gives insight from current and former employees who have anonymously reviewed companies. Life of Pippa blog is blog from a young lady with a chronic illness who has a list of places you can find schemes, mentoring and working from home if you have a disability. Shaw trust is a charity for young adults to help them gain an education, enter work or develop their career. Princes trust help between 11-30 year old's who are unemployed or struggling at school to transform their lives.
If you create or use a LinkedIn account, this can be a useful platform for finding new employers. You can also look out for job fairs in your area if you dont have LinkedIn.
Next steps At the end of this meeting the group was asked to plan next steps and brainstorm the ways MPS Society could help with finding the right career and job opportunities. We are hopeful that after a few more of these meeting to create a plan and list out what we can achieve in all of the above topics.
Resources View the presentation slides from this meeting Watch the video recording of the discussion at the end of the meeting below

Life skills and Independent living

We have not discussed this topic yet

Benefits and financial advice

We have not discussed this topic yet

Education, Exams and University

We have not discussed this topic yet

Mental Health

Read the blog post based on Dr Lynne Aitkenhead's workshop on mental health and emotional wellbeing that was created in response to questions we asked our young adults about what type of advice or information they would like access to including: dealing with personal struggles, coping strategies for stress and anxiety, coming to terms with feeling different to your peers and mental wellbeing during COVID pandemic. Find the post here >>

Practicalities of living with a disability

We have not discussed this topic yet