2021 is a still a year of uncertainty as the world continues to navigate through the impact of the pandemic. What is certain is that we are stronger together.
The theme for the 2021 Global Summit is Innovation, Speed and Flexibility. The event will focus on how we can all take the best learnings from the pandemic and build stronger organisations moving forward. We will once again be gathering virtually, and look forward to learning from and with each other 4-7 October. Registration details will be sent out shortly.
To supplement the learnings from the Summit, LC is in the midst of creating an online 4-part sustainability programme Members can use at your own pace. This programme is designed to help with the main issues raised through the member surveys conducted in June and December 2020. More information will be coming soon!
Within this newsletter are items for you to respond to, so please remember to do so if these items are applicable to your oraganisation:
- What would you most like to learn from a leading global key opinion leader (KOL) in lymphoma? Let us know as this information will be used as part of Coffee with a KOL sessions at the Global Summit and beyond.
- Do you wish the Global Patient Survey was offered in your local language? Now is your chance to let us know what language you wish the survey was offered in and how you will promote the survey and use the data.
- Do you think your organisation exemplifies the Karen Van Rassel Leadership Award criteria? Applications are open until 20 August. The chosen recipient will receive the award and $10 000 USD.
Lastly, a quick update on the Lymphoma Coalition team. Natalie Dren, Research Manager, who has presented on the GPS and LC research into informed vs uninformed patients at previous Global Summits and has been an integral part of the research team, recently left LC as she was recruited to a new role elsewhere. We wish her well as persues this new opportunity but will miss her. Funmi and Shawn are able to respond to any requests you have about research or the GPS. We are looking for a replacement for Natalie's role. Please email me if you may know someone who would be a good fit. LC has a new person helping us with communications - Mikaela - who you will hear from regarding WLAD. We are pleased to have her as part of the team!
Warm regards to all,
Global Summit 2021
The 2021 virtual Global Summit will include a series of special sessions called Coffee with a KOL (Key Opinion Leader).
If you could ask a KOL anything you wanted, what would it be? What topic do you hope they discuss? Do you have questions about a certain type of therapy or test? Let us know by filling out the form here.
The intent is for this program to continue in the months in between the Global Summit.
More information will be coming soon on how to register for the Summit, taking place 4-7 October.
Karen Van Rassel Leadership Award
This is a reminder that applications are now being accepted for the 2021 Karen Van Rassel Leadership Award which includes a $10 000 USD grant for the chosen recipient organisation. Completed applications are due by end of day 20 August 2021.
The award was named after and honours the previous CEO of the Lymphoma Coalition and promotes the values that she held dear:
- Exemplary Improvement in the Care of People Living with Lymphoma
- Outstanding Global Leadership
- A Commitment to Organisational Sustainability
Lymphoma Coalition was pleased to present the 2020 Karen Van Rassel Leadership Award to the Lymphoma Patient Association/Udruženje Obolelih Od Limfoma (LIPA) in Serbia and the 2019 award to Linfomas Argentina. To find out more about the Award, click here.
Only patient organisations that are members in good standing of the Lymphoma Coalition may apply for the Award. You can fill out the application on behalf of your own organisation or nominate another. Answers to questions in the application should include examples of organisational achievements over the past year. You may upload documents to support your application or include web links to resources that show your work within your answers.
The application can be found here: Karen Van Rassel Leadership Award 2021
The Award recipient for 2021 will be announced at the virtual Global Summit being held in October.
Global Patient Survey on Lymphoma & CLL 2022
The Global Patient Survey on Lymphomas & CLL (GPS) will launch in January 2022, Do you wish the survey was offered in your local language? If so, send Lorna an email by 15 July explaining how you will promote the survey to increase participation from your country to the 2022 GPS and your language may be chosen as one of the 19 languages offered in 2022.
As in previous years, countries with 100+ respondents will get a customised report with local data.
ELLyE (Ensemble Leucémie, Lymphomes Espoir)
Two Lymphoma Coalition member organisations have merged to form a new organisation called ELLyE (Ensemble Leucémie, Lymphomes Espoir). France Lymphome Espoir and SILLC (Soutien, Information à la Leucémie Lymphoïde Chronique et Maladie de Waldenström) have joined forces to produce effective and impactful work for patients. ELLyE's ambition is to make the patient's voice heard more clearly and support and inform patients. More information here
New Cutaneous Lymphoma Factsheets
LC has created a series of 10 patient-friendly fact sheets to help you support and educate patients about cutaneous lymphomas. The fact sheets are available in A4 and letter size, accessible here.
The factsheets are companion pieces to the patient guide created a few years ago, providing key information in quick easy-to-use format.
If you wish to use the content with your own branding, please do so.
A big thank you to Susan Thornton from the Cutaneous Lymphoma Foundation for helping with this project.
Research into Community-based Exercise Programs
For members in Europe, Dr Joachim Wiskemann from Universität Heidelberg is conducting research into community-based exercise programs for cancer patients in Europe and neighbouring countries. If there is an exercise program in your area that you think should be included in this study or to find out more, go to https://www.soscisurvey.de/
EBMT Patient, Family and Donor Day 2021
For those that missed the EBMT Patient, Family and Donor Day 2021, the videos are available on the EBMT YouTube channel. It includes an interesting panel discussion on Covid-19, which includes Maja Kocić from LIPA in Serbia, as well as a debate on patient engagement.
In June we were able to share LC research findings at three top conferences.
American Society of Clinical Oncology Meeting (ASCO)
4-8 June 2021
The 2021 ASCO meeting was an opportunity to bring the cancer care community together with a dynamic program of educational and scientific sessions.
LC's abstract described the global differences in the top choices for medical information amongst patients with lymphoma, as well as differences in their understanding of this information relating to various aspects of their care.
This research reinforces the importance of why LC began in the first place; to share resources, best practices, policies, and procedures in order to provide support to patients with lymphoma and ensure that access to care is appropriate and adequate. You can read the full abstract, HERE.
European Hematology Association (EHA)
9-17 June 2021
EHA 2021 Virtual Congress was a key moment to consolidate the knowledge and experience gained worldwide and bring together haematologists in a virtual environment.
LC was pleased to present the abstract "A cross-sectional study examining the impact of ageing on the psychosocial experiences of patients with lymphoma." This study examines how the experinces of patients with lymphoma varies by age group, which suggests suppport and education needs to be designed differently for young, middle and older age patients. To continue reading, CLICK HERE
International Conference on Malignant Lymphoma (ICML)
18-22 June 2021
The International Conference on Malignant Lymphoma (ICML) is a premier event for the scientific community engaged in the study and treatment of lymphoid neoplasms. ICML offers its participants the opportunity to be informed of new results from the most significant studies, discussed by internationally recognised haematologists, medical oncologists, radio-oncologists, pediatricians, pathologists and leading researchers.
LC is proud to be able to participate and to describe our findings A cross-sectional study on the global disparities in information experiences and needs of patients with lymphoma and CLL.
This research is important as informed patients are consistently associated with better outcomes and healthcare experiences. This abstract looks at the global differences in patients' information experiences at diagnosis, as well as comparing the areas of need for more information. Explore the results HERE
Thank you to everyone for publicising the Global Patient Survey 2020. These abstracts are one of the ways this data was used. The 2022 survey will launch in January.
All of LC's research is available here.
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