Beyond the Surface: Supporting People Living with Rare Skin Conditions in ASEAN

Beyond the Surface captures the voices, lived experiences, and aspirations of people living with rare skin conditions (PLWRSC) across Southeast Asia. Developed following the region’s first lived experience‑led Rare Skin Patient Support Summit, the whitepaper brings together insights from more than 50 patient advocates, clinicians, and caregivers across six ASEAN countries.

The report highlights the urgent challenges faced by the rare disease community — including delayed diagnoses, limited public awareness, fragmented care pathways, social stigma, and significant resource constraints. It also outlines practical, people‑centred solutions to improve health and social outcomes. These include strengthening collaboration between healthcare professionals and patient organisations, expanding public education, enhancing community and social support networks, improving access to medical care and treatment, securing sustainable funding, and fostering stronger regional cooperation.

At its core, Beyond the Surface reinforces a simple but powerful message:
the voices of people living with rare skin conditions matter — and inclusive, region‑wide action is essential to ensure no one is left behind.

Click below to download the full consensus statement and explore the recommendations developed by patient advocates and clinicians across the region.

[Download the Whitepaper]