Why This Matters
Too often, patient experiences remain invisible within healthcare systems. Young people living with chronic skin and joint conditions frequently encounter:
Delayed diagnoses
Fragmented care
Limited psychosocial support
Misconceptions and stigma
Gaps in access to multidisciplinary services
While these challenges are widely felt, they are rarely systematically documented in ways that influence policy, research, or healthcare design.
This lecture focuses on how patient organisations can change that.
From Lived Experience to Structured Evidence
The session will introduce the concept of Patient Experience Data (PED) — structured approaches to collecting and analysing lived experience so that it can inform:
Importantly, no formal research background is required. Patient Experience Data can be generated through practical, accessible methods such as:
This reflects a core YASJC principle: Advocacy must be both authentic and evidence-informed.
Demonstrating European Advocacy Breadth
YASJC was founded to amplify the voices of young people with chronic skin and joint conditions across Europe. Since 2022, our leadership has engaged in structured advocacy training, cross-border collaboration, and multi-stakeholder engagement at both national and European levels.
Our work spans:
Delivering this lecture in collaboration with DVMB reflects our growing engagement within national patient communities while maintaining a strong European perspective.
It also demonstrates YASJC’s commitment to contributing not only as advocates, but as facilitators of capacity-building within the wider patient movement.
Building the Next Generation of Advocacy
At YASJC, we believe that the future of patient advocacy lies in:
Structured methodologies
Cross-border collaboration
Youth leadership
Evidence-informed strategy
Ethical, transparent engagement
By sharing practical tools and frameworks with national patient organisations, we strengthen the broader ecosystem of patient representation across Europe.
Join the Lecture
If you are interested in learning how lived experience can be transformed into impactful advocacy, we warmly invite you to attend.
📍 Online Lecture
🗓 Hosted by DVMB
🔗 Event details and registration available here:
https://www.bechterew.de/infothek/veranstaltungen/veranstaltung/online-vortrag-patientenvertretung-gemeinsam-sichtbar-machen-was-betroffene-wirklich-erleben-1
At YASJC, we are committed to ensuring that young patients are not only heard — but meaningfully represented.
Because advocacy begins with voices, but it becomes powerful when those voices are structured into change.
