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Bereavement support

Our Support and Advocacy Team 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 Support and Advocacy team.

Out of hours support is available Monday to Friday 5pm-9pm, weekends and bank holidays 9am-5pm, call 07712 653258.

We also host a thriving WhatsApp community and monthly virtual coffee morning for our bereaved members. If you would like to be sent details about how to join please email us.

Rareminds counselling service

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.

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.

Grief Chat

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. This is why we offer the GriefChat service.

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.