GlobalSkin Conference 2025 – Representing the Ichthyosis Community on the World Stage

Prague, 24–27 April 2025

GlobalSkin (the International Alliance of Dermatology Patient Organisations) is a global network that brings together patient groups from around the world to improve the lives of people affected by skin conditions. It focuses on advocacy, research, collaboration, and elevating the patient voice in dermatology. The Ichthyosis Support Group (ISG) is a proud member of GlobalSkin to ensure that people affected by ichthyosis are represented in global conversations about skin health, research priorities, and healthcare access.

Being part of GlobalSkin is important for patient organisations like ISG because it:

• Strengthens our voice through global advocacy
• Offers opportunities to collaborate with researchers, clinicians, and other groups
• Shares knowledge, tools, and resources that improve support and care
• Helps influence policy and raise awareness of rare and underserved conditions like ichthyosis on a global stage

Membership ensures that our community’s needs, challenges, and lived experiences help shape the future of dermatology care and support.

Our Medical and Communications Manager Mandy, representing the Ichthyosis Support Group (ISG), was delighted to attend the GlobalSkin Conference 2025 in Prague — a unique international gathering of patient leaders in dermatology, hosted every two years. This year’s theme, “Champion”, brought together representatives from over 60 countries to connect, share learning, and strengthen global advocacy for people living with skin conditions.

Attending conferences like GlobalSkin ensures that the voices of people affected by ichthyosis are heard in global conversations about health, research, policy, and care.

Why it Matters for Ichthyosis

Ichthyosis is a rare and lifelong skin condition. By attending GlobalSkin, ISG ensures our community is represented in conversations about healthcare priorities, research, and patient support – on a global scale. These events give us the chance to:

• Share the lived experience of ichthyosis with international stakeholders
• Build partnerships with researchers, clinicians, pharmaceutical companies and fellow advocates
• Bring back knowledge and best practices to strengthen the support we offer
• Raise awareness of ichthyosis and advocate for better mental health, treatment access and recognition in policy

What We Learned and Shared

Day 1 – Rare Dermatology Focus
The conference opened with a focus on rare dermatological diseases. We joined vital discussions around the ongoing need for advocacy, the emotional and mental health impact of rare skin conditions, and the value of healthcare providers who understand and show compassion. There’s a shared recognition that better outcomes come from collaboration across patient groups, healthcare professionals, researchers, and industry.

Day 2 – Mental Health & European Collaboration
The importance of mental health support was a key theme throughout the day. We explored how patient groups can work with healthcare systems to improve access to emotional wellbeing services. ISG also took part in a European regional meeting, addressing shared challenges and the potential for joint working across borders.

Day 3 – Global Policy and the Power of Data
One of the standout moments was hearing about the progress of the Skin Diseases Resolution at the World Health Assembly. This is a major step forward in ensuring skin health – including rare conditions like ichthyosis – is recognised as a global health priority. Find out how to get involved!

We also heard an update on the upcoming publication of PRIDD, a new tool to measure the real-life impact of dermatological conditions. PRIDD has been developed with patient input and is designed to capture the physical, emotional, and social effects of skin disease. It will be a powerful resource to support evidence-based advocacy. Patient-Reported Impact of Dermatological Diseases (PRIDD) is a new and unique measure of the impact of dermatological diseases on the patient’s life and is the first dermatology-specific tool that is applicable to all skin conditions. No other dermatology tool has such broad applicability.  

Day 4 – Digital Innovation and Industry Partnerships
The final day explored how to embrace artificial intelligence and digital communication in responsible and empowering ways. A session with pharmaceutical companies focused on how patient groups can work more effectively with industry – building partnerships based on transparency, respect, and shared goals.

What This Means for Our Community

The GlobalSkin Conference is more than just a meeting – it’s a movement. For the ichthyosis community, it is vital we have a seat at the table where global decisions are shaped.

By attending, ISG:

• Ensures ichthyosis is represented in global dermatology conversations
• Advocates for better support services, treatments, and mental health care
• Connects with potential research and funding partners
• Brings back practical tools and ideas to improve our support and resources

We returned from Prague inspired, informed, and more determined than ever to champion the needs of people with ichthyosis. Our presence at international events like this ensures that our community’s experiences, challenges and insights are not only heard – they are acted upon.

If you'd like to support our ongoing advocacy and research collaborations please consider donating or partnering with ISG.

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