The impact of living with a rare disease: barriers and enablers of independent living and social participation

https://www.eurordis.org/publications/rb-dailylife-report/ Rare Barometer The impact of living with a rare disease: barriers and enablers of independent living and social participation Featuring insights from Fatoumata Faye, Survey Project Manager, Jessie Dubief, Social Research Director, and Raquel Castro, Social Policy and Initiatives Director, this new Rare Barometer report presents the views of 10,478 people living with a rare disease and their family members worldwide, 9,591 of whom were based in Europe. The findings reveal that 8 in 10 people with a rare disease live with disabilities, often complex and under-recognised. The report also highlights high rates of discrimination, unemployment, and unmet needs, underscoring the urgent need for more inclusive social policies.