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ICCL Meeting & Lymphoma Coalition Global Summit

Why We Attended the ICCL Meeting & Lymphoma Coalition Global Summit in Amsterdam

Earlier this October, we traveled to Amsterdam for two important gatherings: the International Coalition for Cutaneous Lymphoma (ICCL) meeting and the Lymphoma Coalition Global Summit 2025. These events brought together patient organization leaders from around the world to collaborate on improving care and outcomes for people living with lymphoma, including cutaneous lymphoma.

While the Lymphoma Coalition Global Summit focused on all types of lymphoma, the ICCL meeting, held the day before the Summit, provided a dedicated space for organizations and experts with a special interest in cutaneous lymphomas to connect, share insights, and develop strategies tailored to this rare and often misunderstood disease.

What We Learned and Shared
Across both events, we engaged in meaningful conversations and collaborative planning around:

  • The Lymphoma Patient Charter – A global framework for patient-centered care. We explored how to use this Charter to advocate for better standards in diagnosis, communication, and support, especially for rare conditions like cutaneous lymphoma.
  • Palliative and Supportive Care – We emphasized that palliative care is not just for the end of life. It’s about improving quality of life at every stage—addressing symptoms, emotional well-being, and the unique needs of people with chronic conditions like cutaneous lymphoma.
  • Global Patient Survey 2026 – We previewed the next wave of patient data that will help us understand lived experiences and drive change. This survey will be a powerful tool to inform research, policy, and advocacy efforts worldwide.
  • Access and Equity – We discussed disparities in care and how collaboration between patient organizations, clinicians, and industry can help close those gaps.
  • Emerging Therapies and Innovations – Experts helped demystify new treatments and answered questions about what’s coming next in lymphoma care.
  • Cutaneous Lymphoma-Specific Collaboration – The ICCL meeting allowed us to connect directly with other organizations focused on cutaneous lymphoma. We shared best practices, identified gaps in care, and began developing joint strategies to raise awareness, improve diagnosis, and advocate for better treatment options.

Why It Matters
Attending both the ICCL meeting and the Global Summit allows us to bring your voices to the global stage. It helps us learn from others, share what’s working, and build partnerships that lead to real change. Whether it’s improving diagnosis, expanding access to care, or supporting emotional wellness, we are committed to advocating for you—together, with a united global community.

What’s Next
We’ll be using what we learned to strengthen our programs, inform our advocacy, and connect with more patients and care partners. Stay tuned for updates on how you can participate in the Global Patient Survey, join awareness campaigns, and help shape the future of cutaneous lymphoma care.