You can help researchers and drug developers learn about the patient experience to help advance science in diagnosis, treatment and seeking a cure by:
- Providing patient experience data
- Learn about and join clinical trials
Read on to learn how you can get involved.
Understanding the patient journey is part of the CL Foundation's mission to improve the lives of those affected by cutaneous lymphoma.
One of the ways we accomplish this goal is by collaborating with other patient organizations with their initiatives and encourage you to share your experience. These efforts provide valuable insights into your challenges and offer guidance for developing patient-centered approaches to care. Your experiences matter. By participating in surveys you are shaping the future of cutaneous lymphoma care.
Make YOUR voice heard!
Patient Experience Posters
Patient experience stories and data are developed into posters (abstracts) that demonstrate the reality, and the uniqueness, of the individual experience of the disease. The collected data can show the differences and commonalities in a measurable way and can help influence decision-makers, clinicians, and researchers. These posters are displayed at medical and research related conferences. See example
Submit your patient experience story
The Global Patient Survey
Launching January 19, 2026, the Global Patient Survey is the largest patient-reported survey in lymphoma and CLL, and your voice matters. If you’re living with cutaneous lymphoma or caring for someone who is, this is your chance to share your experience. The survey captures real experiences related to diagnosis, treatment, quality of life, and turns them into evidence that supports better care, education, and advocacy worldwide.
Our goal is to have 750 responses (stretch goal: 1,000) from the cutaneous lymphoma community. If you have taken the survey in the past, you are encouraged to participate again in this year's survey.
Results from the 2026 survey will:
- be featured at the November 2026 Quality of Life Workshop.
- provide the evidence we need to shape programs and initiatives that truly reflect patient needs over the next two years.
- be submitted, published, and presented at major medical meetings, in peer-reviewed journals, and across stakeholder platforms ensuring your voice drives research, education, and advocacy worldwide.
Your participation in the following projects made a difference:
Global Research on the Impact of Dermatological Diseases (GRIDD)
Abstract on Fatigue - Outcome of Lymphoma Coalition's 2022 Global Patient Survey
Clinical trials are research studies that investigate new or experimental treatments in patients living with a specific disease such as cutaneous lymphoma. These studies are important because they contribute to the overall knowledge and progress of the understanding of cutaneous lymphoma as well as playing an instrumental role in the development and FDA (Food and Drug Administration) approval of new therapies. People who are willing to participate in clinical trials can benefit personally while helping all cutaneous lymphoma patients and potentially furthering important cutaneous lymphoma research.