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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 Monday to Friday 5pm-10pm, weekends and bank holidays 9am-5pm, call 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.

Create a Remembrance tribute

Creating a remembrance tribute is a long-lasting way for you to remember someone you care about by sharing memories and photos and raising funds for those affected by MPS, Fabry and related diseases.

It is the perfect place to share your special stories, thoughts and memories with family and friends by adding music, photos and videos. You can light virtual candles in memory of your loved one and remember significant anniversaries. It means you have one space to keep all those special memories, which you can visit whenever you like for years to come.

For more information on setting up a Tribute, email or call 0345 389 9901.

Grief Chat

Most people expect to be very upset or distressed when someone close to them has died. What takes many people by surprise is how strong the emotions can be, how they can change very quickly, and how long they last. People around you may seem to think you should be ‘back to normal’ after a few weeks or months. You might appear to be your usual self to other people, but you know that on the inside, you’re not even sure what normal is anymore.

Everyone grieves in a way that is unique to them and their relationship with the person who has died. Well-intentioned people may say to you, ‘Time is a great healer.’ Sometimes, however, it can seem that life is more difficult as the weeks and months go by.

We know that no-one can understand exactly what your loss feels like to you. But we do understand that it’s sometimes easier to talk to someone outside of your friends and family about grief and the impact of bereavement of your life and this is why we offer the GriefChat service.

GriefChat was created by bereavement experts and by clicking on the GriefChat box below, you can chat directly to a specially trained bereavement counsellor. GriefChat counsellors are experienced in supporting bereaved people and will listen to your story, explore how your grief is affecting you and help you to find any additional support you might need. GriefChat is a completely free service and is available Monday-Friday, 9am-9pm or by email out of these hours.

​GriefChat provides emotional support for bereaved people, access to trained bereavement counsellors and referral into other specialist bereavement services.