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Rare Minds counselling service

Rare Minds provide a counselling service which is free to MPS Society members. This is a confidential service available to both patients and family members who are over 18. 

Please contact your MPS Society Support and Advocacy Officer if you feel that this is a service you may benefit from.  

​You can find out more about the Rare Minds counselling team on their website. Therapy is available in both Arabic and English. 

Watch the Rare Minds video below explaining their counselling service. 

Rareminds Wellbeing Hub

Whether you have been living with your condition for some time, or if you are currently facing a particularly emotionally challenging period, the Rareminds Wellbeing Hub offers useful resources to help you navigate some of the more common emotional challenges that are often shared across rare conditions. 

Frequently asked questions

By offering a reliable and confidential relationship to talk through whatever is troubling you. It can offer support during difficult times, or in making sense of present difficulties that may stem from past experiences, or fears about the future. Counselling can help you find ways of understanding and managing difficult feelings, or dealing with situations differently.

It can also help you with strategies for managing specific issues such as panic attacks, fatigue or anxiety around scans/treatments.

As living with MPS, Fabry and related diseases occurs within the context of everyday life, it is inevitable that the ‘ups and downs’ of both impact on each other. You can talk to us about anything that might be bothering you, including:

  • Relationships – with a partner, family members, or your medical team

  • Anxiety or low mood

  • Coping with tests and treatments

  • Dealing with diagnosis

  • The impact of MPS conditions on your life choices, and work

  • The psychological and emotional impact of symptoms

  • Body image or identity

  • Loss or bereavement

  • Thoughts or fears about the future

Our counsellors will not tell you what to do, but will provide a safe, confidential relationship to talk through difficult thoughts or feelings, think about options that are open to you, or explore new ways of approaching your difficulties.

Step 1 – Contact the Support and Advocacy Team

Contact a member of the Support and Advocacy Team in confidence either by email or call 0345 389 9901to be connected with the Rare Minds counselling team.

Step 2 – Make an appointment

Once you have been connected with Rare Minds, a counsellor will contact you with either a time to have a quick chat (to answer any questions you have) or with an initial session time. Your Counsellor will also send you some further information about counselling.

Step 3 – Your first counselling session

Appointments are 50 minutes long and usually on Zoom. If you would prefer to use your mobile, you can let your counsellor know. Your counsellor will explain more about the counselling process. This is also your chance to explain what you hope to get from counselling. You will decide, along with your counsellor, how many sessions of counselling might be helpful, how often (e.g., weekly, fortnightly) and for how long (e.g., the number of sessions which might be appropriate).