Page 5 - CamRARE | Unique Feet - Impact Report 2022
P. 5

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
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