Page 5 - CamRARE | Unique Feet - Impact Report 2022

75% of rare diseases affect children, and families

often face many challenges on their journeys

1 The challenge of getting a diagnosis

» The average time to get an accurate diagnosis in 4.8 years

» The average rare disease patient meets 5 doctors before getting a final diagnosis

2 Feelings of isolation

» Rare disease can cause anxiety, stress, emotional exhaustion and loneliness

» Parents are often not believed, particularly before receiving a formal diagnosis

» 95% of carers feel their own mental health is impacted by worries about their
child’s condition (5)

3 Financial challenges

» Two thirds of rare disease patients and their carers are unable to hold
full-time paid employment due to their condition, reducing family income

» High costs of specialised equipment, accessible activities, childcare and
respite, increased travel, educational assessments and prescriptions

4 Becoming your own medical expert

» 70% said they weren’t given enough information at diagnosis

» Patients and families are often left to research their own
condition and even educate healthcare professionals about it

5 Lack of available treatments

» 95% of rare diseases don’t have an FDA-approved drug,

with many relying on unlicensed ‘off-label’ treatments
» Care is often poorly coordinated, 1 in 3 rare disease
patients regularly attends 3 or more clinics