LYMPHOMA COALITION
is a worldwide network of patient organisations with a full or partials focus on providing support to those affected by lymphoma, including chronic lymphocytic leukemia.
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Browse information on lymphoma diagnosis, treatment & survivorship
Patient organisations play an important role in healthcare systems by representing patient perspectives and contributing to research, policy discussions, and access to treatment.
Many organisations collaborate with commercial partners to support programmes, build capacity, and expand their impact. Transparency in these relationships is essential to uphold independence, safeguard credibility, effectively manage potential conflicts of interest, and ensure that patients remain the priority.
Lymphoma Coalition has developed six guiding principles to support patient organisations in navigating these relationships responsibly, ensuring transparency, safeguarding independence, and keeping patients at the centre of all activities.
These guiding principles aim to:
• Achieve consistency and transparency when collaborating with commercial corporations
• Guide on how best to manage commercial relationships
• Enable independence from commercial influences
• Prevent potential conflicts of interest
Enabling consistency, transparency, and independence of patient organisations from commercial influences.
Download the resource to guide on how best to manage commercial relationships and achieve consistency and transparency when collaborating with commercial corporations. lymphomacoalition.org/policy/
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For some, it can take months or even years to get a diagnosis with the rare blood cancer, Waldenstrom macroglobulinemia (WM) - and even longer to figure out what to do next.
As a WM patient who has lived with WM for decades, Betty Ann is doing her part to spread awareness, so that patients may get diagnosed more quickly, and find IWMF’s resources faster.
✔️Betty Ann printed out IWMF’s WM Poster for Newly Diagnosed Patients
✔️She shared the Poster with her Healthcare Team
✔️She sent us this selfie
You can do it too!
👉 Download the Poster here - ow.ly/cgwx50YJ1N2
Email photos to: office@iwmf.com
By sharing this resource, like Betty Ann did, you could help providers recognize WM sooner and connect more patients to IWMF support!
💪Together, we can make a real difference.
💙 WM World Awareness Day is April 17, 2026 ... See MoreSee Less
Living with WM comes with unique challenges—but you don’t have to face them alone. 💙 With the International Waldenstrom Macroglobulinemia Foundation (IWMF), connection, understanding, and support are always within reach.
IWMF offers a wide range of free, trusted support resources, including:
✨ Support & Affinity Groups to connect with others who truly understand
✨ Lifeline 1:1 Peer Mentors for personalized encouragement and guidance
✨ Online Patient Forums to ask questions, share experiences, and learn from the community
✨ Integrative Wellness Program focused on whole-person health and well-being
These safe, welcoming spaces empower patients, caregivers, and loved ones to feel heard, supported, and informed—every step of the way.
🔗 Get started - get support: iwmf.com/get-support/
#WMPatientSupport #WaldenstromMacroglobulinemia #WMWorldAwarenessDay2026
#IWMF #RareDiseaseSupport #YouAreNotAlone ... See MoreSee Less
What are the most common symptoms of Waldenstrom macroglobulinemia (WM)?
Waldenstrom Macroglobulinemia (WM) is a rare, slow‑growing blood cancer—and because it often develops gradually, about 1 in 4 people have no symptoms at diagnosis.
When symptoms do appear, the most common are fatigue and weakness, often caused by anemia. Knowing what to look for can make a real difference.
Other symptoms may include:
😮💨 Shortness of breath
👀 Vision changes, headaches, or dizziness
🧊 Swollen lymph nodes or abdominal swelling
🦶 Numbness, tingling, or nerve pain in the hands or feet
🌙 Night sweats or unexplained fevers
🩸 Easy bleeding, including nosebleeds or bleeding gums
Awareness is a powerful first step toward early detection.
If you or a loved one are experiencing these symptoms, learning more can help guide important conversations with a healthcare provider.
👉 Learn more about WM symptoms: ow.ly/F0f750YCANx
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At the 52nd Annual Meeting of the EBMT, Lorna Warwick, CEO of Lymphoma Coalition, sat down with Video Journal of Hematology & Hematological Oncology (VJHemOnc) to discuss patient experience data, highlighting frequent discrepancies between clinical trial reports and patient surveys.
The interview highlights discrepancies between clinical trial reports and patient surveys, particularly for those with relapsed/refractory Diffuse Large B-Cell Lymphoma treated with CAR T-cell therapy.
As treatment progresses, patient priorities can shift. While cure remains important, many patients place increasing importance on quality of life. Notably, half of patients report that their doctor may not fully understand the impact of lymphoma on their quality of life.
These findings reinforce the need to better align clinical priorities with patient experience. Lymphoma Coalition advocates for the integration of patient-reported data alongside clinical evidence to strengthen patient-centred decision-making.
🎥 Watch the full interview to learn more. www.youtube.com/watch?v=u8obLHYKeW0
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Patients Seminar Cutaneous Lymphomas – Dublin, Ireland
This free Patients Seminar is offered to help patients, care partners and others affected by cutaneous lymphoma receive accurate information about cutaneous lymphoma and connect with other people who share similar experiences.
Hosted by:
Cutaneous Lymphoma Foundation, Irish Skin Foundation, Trinity St. James’s Cancer Institute
Date and Time:
Saturday, 25 April 2026
900-1300
For more information and to register: www.clfoundation.org/pscl-dublin
#CutaneousLymphoma #CutaneousLymphomaFoundation #CLFoundation #IrishSkinFoundation ... See MoreSee Less