From Informal Network to Public Launch: A New Chapter for YASJC

The Informal Years: Building the Foundation

YASJC did not begin with a logo or a website.

It began with conversations.

In our early phase, we focused on building the internal structure necessary to ensure that our advocacy would be meaningful, responsible, and impactful.

During this period, we:

• Defined our core mission and long-term vision

• Identified our strategic pillars and priority areas

• Established specialized working groups

• Developed internal governance and operational frameworks

• Built a cross-border network of committed young advocates

We understood that advocacy requires more than passion.

It requires clarity, structure, accountability, and shared purpose.

By investing in this foundational work, we ensured that when we stepped into the public space, we would do so with credibility and intention.

Why Go Public Now?

Young people living with chronic skin and joint conditions often feel:

• Unseen in policy discussions

• Underrepresented in research

• Misunderstood in healthcare settings

• Isolated in their daily experiences

We believe it is time to change that.

Going public allows us to:

• Amplify youth voices across Europe

• Build partnerships with patient organisations and stakeholders

• Share evidence and lived experience more broadly

• Launch coordinated awareness campaigns

• Strengthen patient advocacy at national and European levels

This moment marks our transition from internal development to outward engagement.

Our Public Launch

On March 4th, YASJC will officially:

Launch our website

A platform that reflects our mission, our work, and our commitment to evidence-informed advocacy.

Roll out our social media presence

Creating spaces for dialogue, storytelling, awareness, and community-building.

Initiate our first public awareness initiatives

Including projects focused on quality of life, mental health, and youth-led advocacy.

This is the beginning of a more visible, structured, and collaborative chapter.

What This Means for the Advocacy Community

YASJC represents a new generation of patient advocacy within chronic skin and joint conditions:

• Youth-led

• Cross-border

• Evidence-driven

• Ethically grounded

• Committed to multidisciplinary, inclusive care

We aim to complement and collaborate with existing national and international patient organisations, not duplicate their efforts.

Our focus remains clear:

Improving the quality of life of adolescents and young adults living with chronic skin and joint conditions.

A Beginning, Not a Finish Line

Our public launch is not the culmination of our work.

It is the starting point of a more visible journey.

We invite:

• Young patients who want to connect

• Patient organisations seeking collaboration

• Healthcare professionals interested in youth perspectives

• Policymakers committed to inclusive dialogue

• Partners who believe in meaningful patient engagement

To join us.

Because advocacy does not begin with institutions.

It begins with people willing to speak — and to listen.

March 4th marks the day YASJC steps into the public space.

And we are just getting started.