Bereavement Support

Respectful and compassionate care for a child or young person and their family members at the end of life ensures their physical, psychological, social needs are met.

We understand how overwhelming it can be to experience grief and we are here to support you and your family: parents, grandparents and siblings included. You do not have to deal with it alone.

Our qualified team of support and advocacy workers offer confidential support to bereaved families for as long as you need. You can contact the support and advocacy team and our helpline is open 9am to 5pm Monday to Friday. Either call 0345 389 9901 or email our Advocacy team.

Out of hours support is available 5pm to 10pm Monday to Friday and weekends. Tel 07712 653258.

MPS Society Counselling Service

Our Telephone and Online Counselling Service is a free, confidential service for all those impacted by MPS, Fabry and related diseases. It is open to both patients and family members who are over 18.

We understand that bereavement can be a difficult time and we want to offer the support of qualified, experienced counsellors who understand the psychological and emotional challenges of living with a rare disease.

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.

Stephen Johnson and Zubyda Azzam are our MPS Society Counsellors. You can find out more about Stephen and Zubyda by reading the Rareminds blog post. Zubyda is able to provide therapy in both Arabic and English.

How do I make an appointment?

By email: to A member of the Support and Advocacy team will contact you in confidence about making an appointment or arranging for a brief initial conversation with one of our counsellors.

By Phone: 0345 389 9901 You will be able to speak to a member of the support and advocacy team in confidence about making an appointment, or arranging for a brief initial conversation with one of our counsellors.

For more information, please visit our MPS Society Counselling Service page.


GriefChat can provide online bereavement support for MPS members. This service is designed to give information, reassurance and signposting into other helpful services. You can chat online with a bereavement counsellor. Writing down your feelings can help you to understand them better. GriefChat counsellors will help you to make sense of how you are feeling.

How to use the GriefChat service

o Visit the website link here and click on the blue box saying ‘GriefChat’ in the right-hand corner of your screen

o Feel free to remain anonymous if you prefer

o Speak to the counsellor about how you’re feeling