The Reality of Rare: Caring for your child, looking after yourself
3 mins read
Monday 26 October 2026
When you’re busy caring for your child with a rare condition, it can be hard to find time to look after yourself. But your wellbeing matters, too.
Join Contact for a special FREE online morning event on Thursday 12 November 2026, bringing together parent carers, people with lived experience and experts from across the rare condition community to share experiences, practical advice and support.
Caring for a child with a rare condition can bring unique challenges. From navigating services and finding the right support to managing the everyday demands of family life, it can sometimes feel as though your own needs have to come last. But you’re not alone. And you deserve support, too.
Our free online event, The Reality of Rare: Caring for Your Child, Looking After Yourself, is an opportunity to hear from people who understand the realities of rare conditions, discover resources to support your wellbeing and learn from others who have faced similar challenges.
Thursday 12 November 2026, 10am–12.30pm, Online via Zoom. Book your FREE place now
What can you expect?
Whether you’re a parent carer looking for support, or involved in a rare condition support group, you’ll hear from inspiring speakers who bring professional expertise and personal experience to the conversation. Our speakers include:
- Lauren Roberts, CEO of Rare Minds, who will share information about their specialist mental health and wellbeing support for the rare condition community.
- Patrick Eneche, a parent carer and sickle cell advocate, who understands first-hand the challenges of caring for a child while managing a health condition of his own.
- Kay Atkins and Anne Murray from the AT Society, who will explore living well with ataxia-telangiectasia (AT) and the support available to families.
- Kirsty Hoyle from Metabolic Support UK, who will explore how recognising people’s rights and listening to their voices can help people with rare conditions live well.
- Kerry Leeson-Beevers from Alström Syndrome UK and Breaking Down Barriers, who will share learning from lived experience.
You’ll also hear from Rachel Gibson, Contact’s Rare Conditions Officer, who will share insights into living with a rare condition and the wider support Contact offers parent carers.
Make some time for you
This free event is a chance to feel understood, discover useful resources and connect with a community that recognises the realities of life with a rare condition.
Join us, take some time for yourself and discover support for both you and your family.