Qualitative needs assessment of financial impact on caregivers of children living with rare diseases

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Qualitative assessment reveals caregiver financial burden in children with rare diseases, highlighting urgent systemic reform needs.

Eighty-two percent of organizations reported chronic caregiver financial distress, highlighting the widespread economic impact.
Average household income losses for caregivers ranged between €500 and €2,000 monthly, indicating severe financial strain.
Interviews with 45 rare disease advocacy organizations aimed to elucidate caregivers' financial burdens through theme analysis.
Urgent needs include caregiver recognition, streamlined benefit processes, and equitable access to financial support.

Delval et al. (2026) studied this question.

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View Full Paper

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Authors

Qualitative assessment reveals caregiver financial burden in children with rare diseases, highlighting urgent systemic reform needs.

Eighty-two percent of organizations reported chronic caregiver financial distress, highlighting the widespread economic impact.
Average household income losses for caregivers ranged between €500 and €2,000 monthly, indicating severe financial strain.
Interviews with 45 rare disease advocacy organizations aimed to elucidate caregivers' financial burdens through theme analysis.
Urgent needs include caregiver recognition, streamlined benefit processes, and equitable access to financial support.

Delval et al. (2026) studied this question.

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