Wellbeing Hub
Resources and information to help you live as well as possible with your rare condition
Diagnosis
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
Uncertainty
The challenge of uncertainty, managing anticipatory grief and anxiety
Change & loss
Types of change and loss, grieving the changes, recovering from trauma
Bereavement
Grief after bereavement, secondary loss, ways to cope, when to seek help
Grief
Acknowledging loss, growing around grief, reaching out to support
Talking about dying
Conversations about dying, practical matters and making memories
Relationships
Couples, sex & intimacy
Being a team, managing difficult feelings, dating with a rare condition
Parenting
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’
Navigating healthcare
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
