Receive a gift this Christmas in our toy giveaway
We are pleased that our charity has been lucky enough to receive donations of toys and gifts that we are able to share with our community.
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Welcome to Rareminds online groups
Two new 8 week groups for our UK members to share experiences in a confidential, supportive space
We are pleased to announce the launch of two new online groups with Rareminds, a
counselling and wellbeing service for rare disease communities for our members. For more
information about the groups, please see below.
Building Parental Resilience group for parents
Date: New date coming soon
Facilitated by: Zubyda Azzam, raremindsCIC psychotherapist
We appreciate that being a parent is not easy at the best of times. Living with the impact of MPS, Fabry or a related condition can add another layer of complexity, and may raise different issues, thoughts and feelings at different points.
This is a facilitated interactive group programme for parents to share challenges, uncertainties and the ‘ups and downs’ of parenting - and to feel less alone with your particular experiences. These interactive sessions will explore issues such as looking after yourself and your relationships, helping your child (and you!) with hospital appointments and procedures, talking with your child about their condition, supporting siblings, and talking about difference.
The group will have up to 10 members and offers a safe, confidential and supportive space to:
- Share experiences with other parents about the impact of MPSS, Fabry or related disease on your family life, and other relationships
- Look after your own wellbeing, as well as your families
- Discuss situations that can be challenging or difficult
- Consider new ways of approaching your experience, or particular situations
NB new members can join by Week 2, but not after that.
Please register for this group by visiting the event details.
Useful links
Contact us
Our helpline is open 9-5pm
Monday-Friday: 0345 389 9901
Out of hours support line open 5pm-10pm Monday-Friday and weekends:
07712 653 258
We would like to talk to you further if you have any questions about these sessions.
Just4Men group for male partners and parents
Date: New date coming soon
Facilitated by: Stephen Johnson, raremindsCIC psychotherapist
We appreciate that being a partner/Dad is not easy at the best of times! Living with the impact of MPS, Fabry or a related condition adds another layer of consideration, and may raise different thoughts and feelings at different points. It may not always be straightforward to know what your ‘role’ is in certain situations, how best to support your partner, and what might be different about parenting as Dad (rather than as Mum!)
Covid-19 and lockdown have added complications for all of us, whether you are (or have been) working from home, not working at all, on furlough, juggling home-schooling, or if support or childcare has been stopped or reduced. With restrictions now easing, there may be new changes ahead in adapting – again - to new ways of living and working.
Whether or not you attended our earlier Just4Men Workshop, this 8 week group offers the opportunity to talk with other men who ‘get it’, and to share unique experiences about being a ‘Rare Dad/Partner’.
The group will have up to 10 members and offers a confidential, supportive space to:
- Share thoughts, feelings and experiences with other men in the same boat
- Explore situations that you find challenging, difficult or worrying
- Consider new ways of approaching your experience or situation
NB new members may join after Week 2, but not after that.
Registration
Please register for this free group by visiting the event details.
Please read our blog post below about the bereavement support that we offer:
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