Wellbeing Hub

Resources and information to help you live as well as possible with your rare condition


Looking for a diagnosis

Waiting for results, deciding on genetic testing, managing uncertainty

Early days

Receiving a diagnosis, reimagining the future, pacing yourself

Living with a rare condition

Rare challenges, ‘expert by experience’, living as well as possible

You and your emotions

Acknowledging your feelings, how to manage them, finding hope

Uncertainty, change & loss


The challenge of uncertainty, managing anticipatory grief and anxiety

Change & loss

Types of change and loss, grieving the changes, recovering from trauma


Grief after bereavement, secondary loss, ways to cope, when to seek help


Acknowledging loss, growing around grief, reaching out to support

Talking about dying

Conversations about dying, practical matters and making memories


Couples, sex & intimacy

Being a team, managing difficult feelings, dating with a rare condition


Ways to recharge, supporting siblings, coping with difficult behaviours

Extended family & friends

Opening up conversations, asking for support, ‘who is good for what?’

Talking about your rare condition

Deciding what to share and when, talking to children &  young people

You & your feelings

Difficult feelings

Ways to understand and cope with difficult feelings

Managing stress

What stress is, and how to cope both short and longer term

Wellbeing basics

Important foundations for mental wellbeing

Mindfulness, relaxation & coping strategies

Practical exercises & techniques to try out and see ‘what works for you’

Appointments (and waiting…)

Looking after yourself during appointments, tests, scans & procedures

Being an in-patient

Preparing yourself, supporting children, what if things go wrong?

You and your medical team

Knowledge is power, multidisciplinary teams, who do you see for what?

Managing transition

New ways of communicating & relating, managing concerns, settling in

Sources of support

Rare condition organisations

Connecting with others, how to find the right support for you

General mental health support

Types of therapy & counselling, how to access, support for young people

Practical support

Financial, social care and education support, support for carers

Crisis support

How to access help urgently