16 April, 2025
Perspectives Podcast by Retina International
Guest speaker: Matt Bolz-Johnson, a mental health lead at EURORDIS-Rare Diseases Europe
Retina International’s Perspectives Podcasts bring you an insightful and in-depth look into the lives of individuals living with retinal degenerative diseases from around the globe.
Co-hosted by Retina International Board Director, David Sanchez, and Retina International CEO, Avril Daly, this podcast focuses on the importance of mental health and rare eye diseases.
This podcast on mental health and rare eye diseases addresses the following key topics:
- Why mental health matters – Beyond just medical treatment, quality of life and emotional well-being are crucial for individuals with degenerative eye conditions.
- Challenges of rare diseases – The psychological impact of diagnosis, uncertainty, and social isolation are often overlooked but deeply affect patients and their families.
- Policy and advocacy – Mental health needs to be addressed beyond healthcare, including in employment, education, and social policies.
- Community & Support – Networks like Retina International’s study on mental health and Matt’s partnership network help individuals connect, share, and access resources.
- Global Perspective – While mental health is becoming a policy priority post-COVID, many regions still lack structured support. This discussion highlights the need for integrated mental health strategies to support individuals with rare diseases, ensuring they have the tools to manage emotional challenges effectively.
Retina International
Retina International is a global umbrella organisation for patient-led charities and foundations who support research into rare, genetically inherited and age-related forms of retinal disease. Retina International is a registered charity in Ireland.
Retina Australia is the only Australian member organisation of Retina International.
https://retinaaustralia.com.au/podcast-mental-health-and-rare-eye-diseases/
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