Self-care and Wellbeing
Carers are awesome warriors – motivated, passionate, and deeply caring for ‘their person(s)’. Caring for family and / or friends with a rare disease can be mentally and physically challenging.
Impact of ‘Rare Care’ on the Family
Everyone faces ups and downs in life, including carers. Caring brings extra emotional, physical, time, and financial demands for the whole family.
Connecting with Others
Connecting with others is especially important for carers of people with rare diseases due to the unique challenges we face.
Practical Information to Help Navigate Finances
Caring for someone with a rare disease can affect your health, energy, and money. Carers often spend more money on travel to appointments, heating, medical needs, or taking time off work.
Going Out – Accessible Places and Events
Planning a day out can take a long time when you care for someone with a rare condition. You may need to check for mobility access at entrances, toilets, parking, and space for equipment, charging points for electricity, quiet spaces etc.
