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.

Social sciences can add value to researching impact of rare disease diagnosis to family

Some of relevant studies

Here are some studies that provide valuable insights into the financial, emotional, and social burdens experienced by families dealing with rare diseases:

 
Angelis, A., Tordrup, D., Kanavos, P.
Title: Socio-economic burden of rare diseases (2015): A systematic review of cost of illness evidence
Publisher: Health Policy
Link: Socio-economic burden of rare diseases: a systematic review

This study provides a comprehensive review of the cost of illness for rare diseases, focusing on the direct and indirect economic impacts on families and healthcare systems.

López-Bastida, J., Oliva-Moreno, J., Linertová, R., Serrano-Aguilar, P.

Title: Social/economic costs and health-related quality of life in patients with rare diseases in Europe (2016)
Publisher: The European Journal of Health Economics
Link: Social/economic costs and health-related quality of life in patients with rare diseases in Europe

This research examines the socio-economic costs and the impact on the quality of life of patients with rare diseases and their families in Europe.

Vermeulen, K., Willemsen, M.H.

Title: The Impact of Rare Genetic Disorders on Family Functioning (2021)
Publisher: Medical Research Archives
Link: The Impact of Rare Genetic Disorders on Family Functioning

This study explores the psychological and social challenges faced by families of individuals with rare genetic disorders, focusing on parental stress, family dynamics, and coping mechanisms.

If you want to know more...

This topic is one of main focus points in my work

These studies provide valuable insights into the financial, emotional, and social burdens experienced by families dealing with rare diseases.

To explore more in-depth articles on the socio-economic impacts of rare diseases and related topics, visit my LinkedIn profile and my blog, 'Zakomplikovana.'

Let's connect and share insights to support affected families together.