We are pleased to be able to offer a short series of online Wellbeing Workshops for those impacted by r(20) syndrome, whether as parents, patients or siblings.
Summary Overview : The aim of all these workshops is to allow those living with a rare condition such as r(20) syndrome a safe, reflective space to explore thoughts, feelings and experiences both around diagnosis and ongoing. This includes the emotional impact on participants themselves, and also the psychosocial impact on family dynamics and lifestyle.
Carefully facilitated interactions with peers can provide considerable therapeutic potential in easing isolation, and in allowing exploration of difficult feelings that may otherwise contribute to the development of anxiety, low mood or depression.
Workshops are facilitated by an experienced psychotherapist/psychologist registered with a recognised professional body.
Workshops duration : 2 hours
Spaces are limited to a maximum of 20 attendees per session and will be awarded on a first come, first served basis.
These workshops have been made possible due to funding provided by the Pears Foundation.
Our first workshop will be for parents/carers on Friday 17th Sept 2021 starting at 19:30 BST. Make sure you sign-up to secure your place!
Workshop facilitated by:
Workshop supported by funding from:
Sign up for a workshop here
Joining instructions will be sent directly to you closer to the date of the workshop. You may also be asked to answer some questions prior to the workshop.
Places are strictly limited and will be issued in a first come, first served basis.
Online Workshop 1: For Parents/Carers: Living with r(20) syndrome – dealing with diagnosis
A workshop facilitated by an experienced psychotherapist exploring the emotional impact of diagnosis , and ‘dealing with diagnosis’ as an ongoing experience over time.
Workshop is based upon a guided PowerPoint, with small breakout groups and whole group discussion depending on group size. There is a different emphasis on each aspect of the Workshop according to both the group dynamic, and according to the composition of the group.
- What makes living with r(20) syndrome unique?
- Outline and Discussion
- Diagnosis: an ongoing impact
- Common feelings plus Exercise (in Breakout groups)
- What feelings do you recognise?
- What do you find hard to accept?
- Who ‘does’ what feeling in your family ?
- When might difficult feelings re-emerge?
- Accepting the difficult stuff
- Knowing Your (Dis)Stress Signs: Outline and discussion
- The 6 Aspects of Living Well with r(20)
- Takeaways discussion
- Additional Resources (issued)
Online workshop: For adults with an r(20) diagnosis
Content to be advised
Online workshop 2: For Parents: You, me and r(20) makes 3
This workshop provides an opportunity for parents to meet with other parents and explore the impact of r(20) syndrome on their relationship (whether living with a partner/not) and family life. It provides time for participants to reflect on their own preferred psychological coping strategies and roles in the family , and the things they find especially challenging. It will also offer strategies for approaching the difficult situations and conversations that often arise in parenting a child with a rare condition.
• Introductions, aims, confidentiality etc
• Understanding different coping styles, and family roles
• Managing friends and extended family
• Resolving differences and conflicts
• Making time for everyone: an impossible task?
• Having difficult conversations : talking about the impact of r(20)
• Stress management, coping strategies and being ‘good enough’
• Additional resources
Online Workshop 3: For siblings (16 plus)
This workshop provides an opportunity for siblings to get together and explore the impact of Ring20 on them, and their own lives. Using a mixture of whole group, small group and individual exercises it will allow siblings to spend some time to reflect on what part having a sibling with a disability has played in shaping them into the person they are. It introduces the idea that siblings of children with chronic/genetic conditions or learning difficulties often learn to put their own feelings ‘second’ to others. It offers up strategies and self-awareness exercises to encourage participants to be mindful of, and more comfortable with, their own needs in their wider relationships as adults.
• Introductions, aims and confidentiality etc
• Exploring first impacts: outline and discussion (breakout groups/whole group)
• Family roles: who does (or doesn’t do) what? Outline and exercise
• You and your sibling Outline and Exercise
• Difficult feelings: where do they go? Outline and exercise
• Accepting differences
• Acknowledging your own needs
• Resources and further support
We are a group of psychotherapists and counsellors who have been providing specialist Online and F2F Mental Health Services (eg individual counselling, clinical supervision, groups, written resources, workshops and training) to the rare disease community since 2014. We recognised that there was little expertise or acknowledgement about the unique psychological impact of rare diseases (and the challenges faced by those impacted by them) within generic statutory psychological/counselling services, and formed as a group to address this need.
In 2020, in order to expand our services and share expertise we formed RaremindsCIC , a non- profit Community Interest Company (limited by guarantee.) Our aims are:
• To work with charities and existing services to provide access to professional Counselling and Emotional Wellbeing Resources To train up, and provide access to, professionally managed and qualified counsellors/psychotherapists with expertise in general and discrete rare conditions to work closely alongside patient communities providing a range of Workshops, Courses and Individual/Couples Therapy.
• To become a centralised hub of expertise of rare disease mental health, drawing together professionals and patients to inform policy and practice, and working with rare disease partners to collate data and knowledge on the rare disease mental health experience at both the specific disease level, and for the wider community
• Providing education and training for both rare disease and mental healthcare professionals on the complex biopsychosocial impact of rare diseases
Our Vision is for the psychological and emotional aspects of living with a rare disease to be recognised as integral to rare disease care, with access to appropriate quality services for all
Our services are funded directly by organisations using our services, by donations, and by revenue raised from running Workshops and Trainings for healthcare professionals. As a newly formed CIC, we are also currently seeking corporate sponsorship and grants. We also operate a direct access Private Therapy programme, where therapists donate 10% percent of their sessional fee to raremindsCIC to support Service provision.