The Socio-Economic Impact of Rare Diseases on Families
As someone deeply engaged in the field of sociology and with a focus on rare diseases from the patient's perspective, I understand the profound socio-economic challenges that families face when dealing with rare diseases. These challenges extend beyond financial burdens to emotional and psychological stress, affecting family dynamics and quality of life. The studies by Angelis et al., López-Bastida et al., and Vermeulen & Willemsen provide crucial insights into these multifaceted impacts. They highlight the need for comprehensive support systems that address families' economic and emotional needs. Policymakers, healthcare providers, and society at large must recognise and address these burdens to improve the overall well-being of affected families. Through my work and research, I aim to contribute to this vital discourse and advocate for better support and resources for those impacted by rare diseases.