Building rare resilience

Online | Workshop

We are delighted to be re-running our 2022 workshop on Building Rare Resilience

Leading a rare disease community is unique in its demands and can be both rewarding and challenging. Rare leaders, who often work alone, assume multifaceted roles within their communities.

They serve as experts in their respective conditions, act as catalysts for research initiatives, and frequently serve as a crucial support system for patients and families navigating the complexities of understanding and accepting their diagnoses.

Picture of two women chatting

Being a rare leader demands a significant investment of personal time and energy, and leaders’ mental health can often take a back seat to the needs of their community.

This three-part workshop aims to give patient group leaders the space to focus on their own mental health, after all, you can’t pour from an empty cup.

The workshop will be led by mental health experts Rareminds and will look at:
  • boundary setting
  • managing expectations
  • dealing with burnout

Through activities and discussion, you will learn practical tools and strategies to look after your own well-being as a rare leader.

This workshop is a repeat, spaces are limited and priority will be given to individuals taking part for the first time. While attending all three sessions is recommended for the optimal experience, each session is designed to stand alone, allowing you to select the ones most relevant to you.

Session one: How did I get into this? Being a community leader and having a life

Tuesday 12th March, 11:00 – 13:00

In this series of workshops, we move the focus away from the needs of your community to your own well-being needs as a Patient Leader.

The workshop will explore:

  • How ‘lived experience’ can be a great asset to your role, but can also bring challenges
  • The common challenges and pressures of running a small rare disease patient organisation
  • How to find, or keep, boundaries between your work as a patient leader (paid or unpaid) and your personal life
  • Ways to maintain ‘work-life’ balance

Session two: Stuck in the middle – managing expectations and competing demands

Tuesday 19th March, 11:00 – 13:00

When running a patient community, it can sometimes feel like it becomes all about what you ‘aren’t doing’ rather than celebrating and recognising your achievements as a Leader.

The workshop will explore:

  • The common characteristics and experiences of Rare Leaders
  • Managing the expectations and demands of stakeholders – whether it’s your trustees, your community, industry/healthcare professionals, or your own!
  • Strategies for keeping your own emotional well-being ‘in the picture’

Session three: Avoiding burnout

Tuesday 26th March, 11:00 – 13:00

Those living with rare conditions often experience a lot of unmet needs and correspondingly high emotional distress. Rare Leaders are often highly motivated to not disappoint the communities they serve, but can then run the risk of ‘burning out’ as a result.

The workshop will explore:

  • What is burnout?
  • The importance of ‘pacing’ (personally and organisationally)
  • Explore ways to prevent, or recover from, burnout

Meet the trainer

All workshops are facilitated by Kym Winter, CEO and Clinical Director, Rareminds CIO
Picture of Kym Winter

Kym is the Clinical Director and Founder of Rareminds, a UK based charity providing specialist psychotherapy, counselling and emotional well-being resources to rare disease communities.

A psychotherapist for nearly 30 years across the NHS, higher education and UK third sector, she has worked with individuals, couples, leaders and healthcare professionals impacted by rare diseases since 2013.

She also has lived experience of a rare genetic condition in her immediate family.


Our new deposit scheme

Registering for this workshop will require paying a refundable deposit of £5 per session upon registration. This deposit will be kept safe in Eventbrite until after the training has been completed.

Following the event, if you have attended and signed in, you will get your full deposit back.

We understand that circumstances can change, especially in the rare disease community. Should you register for the event and realise you can no longer able to attend please let us know as soon as possible.

We will endeavour to refund your deposit in full provided reasonable notice is given. Reasonable notice for this event is no later than 3 working days before.

Find out more about our deposit scheme here. If you have any questions, please contact

Spaces are limited so claim yours now to avoid missing out!

Key details

Key details:

Also coming up…