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The latest Report Card on Lymphomas focuses specifically on the experience of those diagnosed with an indolent or slow-growing lymphoma, and the challenges living with a chronic cancer brings. Despite the existence of defined care pathways and referral processes, patients’ experiences are rarely linear and always unique, which allows space for gaps in support. Through gaining a better understanding of the challenges and issues that patients’ face during each phase of their care, LC hopes to bring awareness to and aid in bridging these gaps.
Using data from the 2022 Global Patient Survey on Lymphomas & CLL, this report aims to:- Identify key issues and challenges for patients living with indolent lymphoma, by stage of the patient experience and by subtype.
- Highlight concerns that are consistent throughout the entire indolent patient experience.
- Determine areas where patients require additional care, information, and support.
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| The report includes a number of recommendations to address the identified issues, and lays out steps LC will take to help. I encourage you to read the report and see if the messages resonate, and think about what your organisation can do to support the unique issues of this patient group. |
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Register for the 20th annual Global Summit
Don’t wait, register now for the 20th annual Global Summit in Madrid, Spain! For the first time the summit will be extended to 2 ½ days, 17-19 October 2023, allowing for more opportunities to connect, learn, and collaborate.
Due to cost and space limitations, only one person per organisation is invited to attend the in-person meeting this year. Thank you for adhering to this requirement!
Please complete the registration form linked below to confirm whether you will attend the Global Summit. The deadline to register is 21 July 2023. |
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If you’re not planning to attend, we would appreciated if you could complete the registration with the “No, I will not attend the LC 2023 Global Summit” box marked. | The registration form can also be manually completed and emailed back to Kim at kim@lymphomacoalition.org.
Please click here to visit the LC website for all Global Summit Forms. (If you require a new Member login or password, please contact marketing@lymphomacoalition.org). |
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Association of Cancer Patients in Finland
Matti Järvinena, a member of the board of the Association of Cancer Patients in Finland, analysed the data collected from the Finnish participants in the Lymphoma Coalition Global Patient Survey (GPS) to gain insights into the specific needs and experiences of lymphoma and CLL patients in Finland.
This is a great example of how the GPS survey results can be utilised to guide policy, improve patient care, and tailor support services to meet the needs of the lymphoma and CLL patient community. |
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The Patient Advocate Incubator
Campaigning for Cancer has created an online program, “The Patient Advocate Incubator,” a platform for patient advocates by patient advocates. The incubator consists of a learning platform that is adaptable and user-friendly with facilitators and experts relevant to the advocate’s business needs, market and region (e.g., language, methods of learning, timing, existing knowledge base of the advocate, networking opportunities and mentoring). The programs are delivered by training consultants, global coalitions, and alliances, and occasionally programmes are provided by patient advocates and peer groups. Currently, there exists an array of training and capacity-building programmes, resources, and tools designed to: - Support Advocates by strengthening their capabilities and empowering them to be considered valued stakeholders.
- Provide accessible and reliable information and training regarding capability tools and advocacy skills.
- Present a curriculum and high-standard content relevant, pragmatic, and relatable to needs and constraints.
The Patient Incubator Platform currently offers two learning modules: PAG Capacity Building Workshop and Patient Academy. PAG Capacity Building Workshop has five modules that cover grassroots advocacy, navigating healthcare systems, disease education, leadership, and credible information. Meanwhile, Patient Academy has two modules that cover strategy building and crisis management. |
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Women in Lymphoma (WiL): Mantle Cell Lymphoma Treatment
May 17, 2023 3:00 PM EDT
These webinars are designed to provide valuable insights, information, and updates on the latest advancements in lymphoma. The webinars are free and open to all clinicians, researchers and educators in lymphoma, industry and associated fields. |
Novel Treatment Options for
T-cell Lymphoma
May 24 4:00 PM EDTThis webinar will provide patients with an overview of novel treatment options for various T-cell lymphoma subtypes, including Peripheral T-Cell Lymphoma (PTCL) and Cutaneous T-Cell Lymphoma (CTCL). |
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Update on Oral Therapies for Lymphoma and CLL/SLL
May 25, 2023 1:00 PM EDT
The webinar offers an overview of lymphoma and CLL/SLL. Participants will learn about oral therapies as a potential treatment option, as well as new and emerging treatment approaches. Followed by a Q&A session.
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Pregunte al doctor sobre el linfoma
Viernes, 26 de mayo del 2023 1:00 PM hora del Este
Descripción general del programa:- Descripción del linfoma
- Pruebas de diagnóstico
- Opciones de tratamiento
- Sesión de preguntas y respuestas
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A new report from Lymphoma Coalition outlines the health literacy landscape in Asia-Pacific by examining the state of current health literacy policies for ten countries and conducting a comparative health literacy policy analysis in four key areas:
1. Policy development.
2. Areas of policy priority and focus.
3. Funding to support policy development and implementation.
4. Measurement of population health literacy. |
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Lymphoma Coalition has been actively participating in several conferences around the globe, sharing our latest research findings on the patient experience. |
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ASCPT 2023 Annual MeetingAtlanta, Georgia, 22-24 March 2023
Lorna spoke about patient experience at the American Society for Clinical Pharmacology & Therapeutics Annual Meeting, as part of a session called “Hi Cancer, We Come Bearing Gifts, Antibody-Drug Conjugate.” ADCs represent a rapidly evolving area of oncology drug development and hold significant promise. There are currently 11 ADCs on the market for varying types of cancer, and more than 80 ADCs are in the pipeline with multiple drugs in advanced stages of clinical trials. The session also included perspectives from industry, and the FDA.
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49th Annual EBMT meetingParis, France, 22-26 April 2023
During the meeting LC presented the poster, “A Cross-Sectional Study Examining Potential Demographic Barriers to Receiving Information on Clinical Trials in Relapsed/Refractory Patients Who Have Received Stem Cell Transplants (SCT).”
This study investigates the potential socioeconomic barriers to receiving information on clinical trials or the opportunity to participate in them for patients with lymphoma who have previously received SCT. |
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| The EBMT meeting, Patient, Family and Donor Day (PFDD) took place on 23 April 2023. Natacha Bolanos, Head of Membership & Alliances at Lymphoma Coalition and Guy Guy Bouguet, President of France Lymphome Espoir and Treasurer on the LC Board of Directors, chaired the Patient Advocacy Sessions and were instrumental in organising PFDD. |
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| Additionally, Lymphoma Coalition’s CEO, Lorna Warwick, spoke on the importance of improving the quality of life (QoL) of patients treated with CAR-T therapy or stem cell transplant as part of the nurses session. |
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AACR Annual MeetingOrlando Florida,14-19 April 2023
LC was pleased to attend the AACR Annual Meeting and present the poster, “Identifying Factors that Affect Barriers to Lymphoma Treatment during the COVID-19 Pandemic.”
This study conducted a sub-analysis to rank the influence of core demographic variables in predicting barriers to lymphoma treatment during the COVID-19 pandemic in 2020 and 2022. |
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 | | Amanda Watson, Jr. Health Insights Researcher, presenting poster at ACCR meeting. |
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These conferences provide an excellent platform for Lymphoma Coalition to share insights and engage in discussions with other experts, furthering our mission to improve lymphoma outcomes across borders and ensure patient voices are heard.
To view all of LC’s Research CLICK HERE |
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