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Rare disease counselling service for 16+


We are pleased to launch our new Young Peoples Counselling Service at the MPS Society. This is a free, confidential service for UK MPS Society members which can be accessed online or by telephone. 

 Our MPS Society Young Peoples counsellor is Rebecca Hargreaves, provided for us through Rareminds. 

Info for young people

More about Rebecca here: 

I am a professionally trained counsellor and Member of the British Association for Counselling and Psychotherapy. My early career was in nursing, and then more recently (since 2016) as the Clinical Lead in a school Counselling Service working primarily with 11 to 18 year olds. I also have a BACP post-graduate Counselling Children and Young People Proficiency and have been working with rare diseases since 2019.

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 Meet Rebecca Hargreaves 

There is more about the MPS Society Counselling Service generally here.  


Here are some questions you might have about the Young Peoples counselling service. 

How do I access counselling? 

Step 1 – Request my contact details

Contact a member of the support and advocacy team in confidence either by email or call 0345 389 9901. You will be given my email address so that you can contact me direct yourself. This is called ‘self referral’ and is an important part of you being in control of ‘how it all works.’

Step 2 – Make an appointment

Once you have emailed me, I will contact you with either a time to have a quick chat (to answer any questions you have) or with an initial session time. I will also send you some further information about counselling.

Step 3 – Our first meeting

Appointments are 50 minutes long and we will usually meet on Zoom. Let me know if you would prefer to use your mobile. I will explain more about how I work, and it is your chance to tell me why you got in touch. This will mean letting me know more about what you are struggling with, and what you hope to get from counselling. I will also explain more about confidentiality, and some other general information too. 

We will decide together how many sessions of counselling might be helpful and how often (for example, weekly, fortnightly) and for how long (for example, the number of sessions which might be appropriate). If I think another sort of help might be better for you, I will talk this through with you too.

Do my parents need to know?

It is up to you whether or not you want to tell your parents you have contacted me. I do not let anyone else know you have contacted me, including your healthcare team. There are a few exceptions to this such as if I was concerned about your own (or someone else’s safety) and I will explain more about this when we meet initially. I have produced information for parents here, which you may find helpful to share with them.

I have produced information for parents here, which you may find helpful to share with them.

What sort of things can I talk about?

You can talk about anything that is on your mind, and preventing you from living as well as possible with MPS, Fabry or a related condition. This might be how you are feeling in – or about - yourself, coping with the impact of your condition, relationships in your family or with friends, at school/university, or worries (or hopes) about the future.

I’m not sure about counselling, can I still contact you?

Of course. If it would be helpful to have an initial chat before going ahead or not, just let me know when you first make contact. 

Remember: You are not alone! 

Information for parents and carers 

About the Service 


The MPS Society Counselling Service was set up in 2021 in partnership with RaremindsCIC, who specialise in counselling for those impacted by rare, genetic and undiagnosed conditions. Two counsellors (Stephen Johnson and Zubyda Azzam) began working with our adult community in 2021. In 2022, the service expanded to offer counselling to ages 16+ with the appointment of a new Young Persons Counsellor, Rebecca Hargreaves. 

If your son or daughter is thinking about counselling, some young people may want your help to make contact. Others, depending on age and reasons for coming, may not want to involve you, or want it to be private. 

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Other helpful resources

YoungMinds are a mental health charity for children, young people and their parents, making sure all young people can get the mental health support they need.

Rare Youth Revolution is a global news and opinion, digital magazine platform, dedicated to powering up the voices of the youth rare disease community. They also have a Facebook Community.

Papyrus is for young people under 35 in crisis or feeling suicidal. They run a young persons helpline (HOPELINEUK) on 0800 068 4141 (open 9am - midnight every day of the year) or you can email

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