Training & Awareness
We provide experienced speakers and workshop leaders for both patients and professionals online, or in person, to raise awareness of the psychosocial impact of rare disease – both generically and specifically. We have run sessions on:
- The Psychological Impact of a Rare Condition
- It’s Cancer Jim, but not as we know it!
- Managing Transition (A guide for Parents and Teenagers)
We can help you design Poster Presentations for conferences or professional meetings. We have provided speakers or presenters for patient and professional events including society conferences, European Neuroendocrine Tumour Society Conferences, INCA and pharma-funded clinical nurse specialist trainings.
Our aim is to ensure mental health awareness and support is integral to rare disease care.
Peer Mentoring Training
4-6 week online course
We run a 4-6 online course for 1.5 hours per week to support your patient leaders and peer supporters grow in confidence and help prevent burn-out. It covers issues such as managing boundaries, dealing with difficult situations, managing group dynamics, dealing with difficult feelings and sensitive signposting.
Support & Supervision for Patient Leaders
Being a patient support lead can be very rewarding. It can also be at times frustrating, draining or worrying. Having a confidential space with a trained rareminds professional to discuss issues such as managing group dynamics, difficult experiences or worrying situations is an important aspect of looking after your own mental health and wellbeing.
We can support your patient support leaders individually, or in a groups with others. We also run regular Patient Leader Development Groups for patient leaders / peer supporters, facilitated by one of our experienced therapists.
If you are interested in our Supporting Patient Leaders work, do get in touch.
Support for Healthcare Professionals
We are here to support healthcare professionals too. This might be for your own personal development, consultancy/advice, or a training for your organisation or group. We are always interested in working on joint projects to support you and your rare disease patients.
Our partner charities have often been supported by pharamaceutical companies or grants to provide training or run targeted projects.
We have provided training and events such as:
- 9The Psychological Impact of being 'Rare'
- 9"I've not got time for this" the experiences of adolescents, young adults and and Clinical Nurse Specialists
- 9Making the most of online consultations (For Counsellors, Doctors and Nurses)
- 9Breaking Bad News
Our 8 week Online RareMindfulness Programme (with a maximum of 12 participants) meets interactively every week, and is based on the Breathworks Mindfulness Based Pain and Illness Management (MBPM) Programme.
Groups are facilitated by a Breathworks Associate Mindfulness Teacher with a specialist awareness of the emotional challenges of living with rare disease, and will also work with your organisation to understand your particular disease and community.
Over the 8 weeks, group participants build up a range of techniques and practices to integrate into everyday life that can help address some of the challenges of living with rare disease.
Providing research and data is an important aspect of raising awareness of both rare disease generally, and your specific condition.
We can provide content for projects or campaigns around mental health and rare conditions, and help with social media.
Copy for Newsletters, blogs etc
We can write, or contribute to, newsletters and blogs on mental health, emotional wellbeing and the psychosocial impact of rare disaeses. We are always interested in hearing about new ideas, or brain-storming for new ones! Do get in touch for an initial informal chat.
Annual / project reports
Our Counselling Services provision for your charity includes an Annual Report on the psychosocial issues that your rare disease community are raising. This data provides insight into the challenges facing both your community, and the wider rare disaese world.
This in turn contributes to policy or funding decisions (and awareness) at both the local and national level.
Journals & Articles
We have recently been funded to co-author:
- 9MEN2 and Quality of Life: A review' (British Journal of Endocrine Related Cancer 25:2 T69-T77)
- 9'Mind the Gap - the Psychological Impact of Neuroendocrine Cancer (due Dec 2020)
- 9Living Rare: the Psychological and Emotional Impact of Rare Disease (For BACP Counselling in Healthcare Journal, due 2021)