We work with groups, charities and organisations to provide group programmes and workshops for rare condition communities. We can also offer support, consultation, training and supervision for staff, volunteers and teams.

Group programmes and courses for rare communities

Our 8-12 week programmes for rare communities help develop emotional resilience and promote supportive peer relationships. The programmes provide a facilitated small group community to help ease isolation, share experiences, explore coping strategies, and reflect on the respective personal and interpersonal challenges of living with the impact of your particular rare condition.

I’ve never sat through anything before where someone ‘got’ what a rare diagnosis feels like.”
– Workshop attendee

Mindfulness for stress, pain, fatigue or anxiety

Our 8 week online mindfulness programmes (with a maximum of 12 participants) are based on the Breathworks Mindfulness Based Pain and Illness Management (MBPM) Programme.

Groups are facilitated by an experienced and qualified Mindfulness Teacher with a specialist awareness of the emotional challenges of living with a rare condition. We can also work with groups, charities and organisations to understand the particular impact and stresses of living with a specific rare condition, and adapt the programme accordingly.

Over the 8 weeks, group participants build up a range of techniques and practices to integrate into everyday life that can help address and manage some of the challenges of living with a rare condition.

Living with (your condition)

Our 8 week programmes are facilitated by an experienced counsellor/psychotherapist and are part psycho-educational, part experiential. A closed group of up to 12 participants, each week is based around a theme such as managing uncertainty, making the most of appointments, relationships etc. Developing a supportive micro-community of peer relationships through attending the group also helps mitigate isolation, and build emotional resilience through shared lived experience.

This course has made me feel more resilient and able to fight my corner as far as the healthcare I deserve to receive. I definitely feel stronger and less isolated and I’ve re-found my voice.”
– ‘Living With’ group participant

We can also run our Group Programmes for particular cohorts with shared experiences, for example, ‘Newly Diagnosed’, ‘Parents’ or ‘Friends and Family’.

Online workshops for rare communities

Our online workshops are facilitated by a qualified counsellor or psychotherapist, usually for up to 12 participants. They address key challenges in the rare journey to help promote emotional wellbeing and coping strategies. They can also be a useful means of introducing counsellors to a rare community, and facilitating awareness of, and access to, counselling.

Topics offered:

• Dealing with diagnosis (for either affected persons, or carers)
• Dealing with diagnosis: Talking with your child
• Managing transition (A survival guide for parents)
• Living with uncertainty
• Living with [your condition]: Looking after your emotional wellbeing
• Mindfulness for stress, pain, fatigue or anxiety
• Making the most of your medical team

Other topics available on request.

Although we do offer some generic workshops and presentations, we believe that it is more therapeutically impactful to tailor them to each unique rare condition and spoken to directly from the perspective of that particular condition’s challenges, journey and impact over time.

I just wanted to say a HUGE thank you for your time and the energy you put into the session, it’s massively appreciated. I feel like every one of the youth ambassadors took something valuable away from it, myself included. It was a real lightbulb moment for me personally, and I’m really looking forward to hearing everyone else’s thoughts as well. Thank you again for everything, it really made a difference.
 – Rebecca Hargreaves, Youth Coordinator, Childhood Tumour Trust.