It certainly has been a busy start to 2022 and there are a lot of updates in this newsletter.
I want to bring attention to three items that require your participation.
- World Lymphoma Awareness Day 2022 planning is in the works. We would like to meet with Members to discuss this year’s plans on May 2nd at 8 PM ET and May 3rd at 8 AM ET . The links will bring you to the times in your time zone. Please hold the dates. More information will be available at these meetings but we are continuing the next phase of the successful We Can’t Wait campaign from 2021.
- There is information below on the response to the conflict in Ukraine. To help keep spirits up and let those who are supporting this initiative know they are valued, an updated World of Thanks campaign has been developed. You can help us express our thanks to all our partners who are supporting Ukrainians affected by blood cancer at this difficult time. Look for information on this campaign in a separate email coming to your inbox soon.
- The plan is for the Global Summit 2022 to be IN-PERSON in Porto, Portugal the beginning of October. A save-the-date will be coming soon. Cross all your fingers (and toes!) that we will be able to meet together. Some portions will be available virtually for those who cannot yet travel.
2022 has been a busy year to date, but it has also demonstrated to us how well the lymphoma community can rally to support those in need. This has been so wonderful to see. Thank you to each of you for your dedication to making this world a better place for everyone affected by lymphomas.
Ukraine Conflict Response
Lymphoma Coalition is continuing to help support those in Ukraine affected by a blood cancer. This includes moving patients and their loved ones to other countries where there are hospitals who can continue their care, as well as getting much needed cancer medications into the country and to the hospitals that need them.
As I am sure you can imagine, this is a complicated process with many moving parts, as patient health status changes and where active conflict is happening. We could not be doing this without the support of many partners.
- LC Member organisation Ukrainian Public Association for patients with chronic lymphoproliferative diseases continues to play a pivotal role, and we are thankful to AIL and ELLyE who have been helping with practical support as patients move to Italy and planning for the movement of some to France. As well, Member groups in surrounding countries, like Slovakia and Romania, have been helping support those who cross the borders through their own mechanisms.
- Scientific societies are rallying support, especially EHA and EBMT , helping identify clinicians who can provide care, coordinating medications, and providing other support.
- New groups have stepped up to help, including developers who are building custom software we can use to connect and track patients within hospitals, and Zivver for electronic transmission of medical records and other confidential information.
- Lastly, we could not do this without the groups in Ukraine who actually provide transport for the patients out of the country. Helping to Leave has been a big support for us and we are grateful.
This effort takes a community and the lymphoma community has definitely rallied in very practical ways. If you would like to help, please contact Lorna Warwick , CEO; Natacha Bolaños , Head, Membership & Alliances; or Marjorie Morrison, Director, Membership & Alliances.
A list of resources that may help those displaced by the conflict can be accessed here.
LC is excited to announce we have a new Member organisation. Welcome to Lymphoma Philippines! Started in 2016, the organisation has grown to include over 1,700 members. They have created a safe space for information-sharing among Filipino lymphoma patients, provide financial support to patients in need, and raise awareness of lymphomas and issues accessing best care.
Thank you for helping promote the 2022 Global Patient Survey on Lymphomas & CLL. Your efforts are much appreciated! The numbers will be finalised over the next week. Eighteen (18) countries will be receiving country reports and we look forward to working with you on how you can use the data. More information will be coming soon.
EHA Fellowship Application and Registration process is open!
The hybrid EHA Congress 2022 will take place from June 9 to 12 at the Messe Wien Exhibition & Congress Center, Vienna, Austria, and will be supplemented with additional Virtual Thematic days on June 15-17, 2022.
Deadline for patient advocate fellowship applications is April 17 2022 . Accepted advocates will be informed afterwards by email.
- EHA will provide 100 full registration Fellowships for the hybrid meeting.
- In addition, there will be one individual full registrations for the leaders (one per PO) of the 15 umbrella patient organisations partnering with EHA.
EHA will once again include the Joint EHA-Patient Symposium. There will be in person sessions and some others for the extended virtual piece of the congress.
There will be an exhibition in Vienna, and the Collaboration Plaza will be our place for a common Patient Advocacy Booth.
The European Conference on Rare Diseases and Orphan Products (ECRD)
The next ECRD will take place fully online from 27 June to 1 July 2022.
This 11th edition follows a pivotal two-year Rare 2030 Foresight Study , supported by the European Parliament and European Commission, that guided a large-scale and multi-stakeholder reflection on rare disease policy in Europe through 2030.
The deadline to submit a poster abstracts has been extended until 21st April 2022.
Outsourcing in Clinical Trials Europe 2022
Join Natacha Bolaños, Head, Membership & Alliances on 4th May who will share her insight on how to make clinical trials less bureaucratic.
Use code: MPMK
LRF’s Update on Mantle Cell Lymphoma Webinar
You are invited to register to hear from a leading MCL expert, MD and oncologist Michael E. Williams MD on Thursday, April 21, 2022 2:00 PM EDT (11:00 AM PDT) who will be presenting new data about the latest developments in the treatment of Mantle Cell Lymphoma.
This program is for patients and survivors, caregivers and program supporters.
Help Lymphoma Coalition gain a better understanding of the CAR-T therapy experience of patients with lymphoma and CLL and their caregivers.
This project is open to those who received their CAR T treatment in France, Germany, Spain, Switzerland, USA, or UK.
The CAR-T project objectives are:
• Gain insights by hearing the patient’s voice on the disease’s impact on patients’ everyday life and activities.
• Understanding caregivers’ and patients’ burden and needs.
• Detection of potential access hurdles to medical care and healthcare gaps.
The information gathered will help us to be better equipped to advocate for change that will improve care globally and within countries, as well as provide you with the support you may need locally.
What is involved?
• Preliminary survey collects information from patients and caregivers who have experienced CAR T
• In-depth interviews with selected patients and caregivers.
Links to all the surveys can be found below.
Understanding Patients’ & Caregivers’ Experiences
Comprendre le vécu des patients et des aidants
Die Erfahrungen der Patient: innen und Betreuungspersonen verstehen
Comprender las experiencias de los pacientes y los cuidadores
The 48th EBMT Annual Meeting was held on 19-23 March 2022 virtually. This meeting brings together healthcare stakeholders from all over the world to discuss the latest research in hematological transplantation and cellular therapies. Lymphoma Coalition is proud to contribute to the following sessions:
“Every time we talk about a patient, we talk about a family. Many hospitals now don’t know who is going to pay specialised care and innovative treatments. Some centers in some countries cannot assume that burden by themselves.”
Lymphoma Coalition Head, Membership & Alliances
Lorna Warwick spoke on improving the CAR-T therapy patient and carer experience.
To browse all the sessions from the 48th EBMT Annual Meeting CLICK HERE
4th European CAR T-cell Meeting
the 4th European CAR T-cell Meeting, jointly organized by the European Hematology Association and the EBMT , holding Feb 10-12, 2022.
Lymphoma Coalition provides insight into the healthcare decision-making experience of patients with diffuse large B-cell lymphoma (DLBCL) who have been treated with CAR-T therapy in comparison to those who have not been treated with CAR-T therapy, using the Lymphoma Coalition (LC) 2020 Global Patient Survey (GPS) on Lymphomas and CLL. The results show that CAR-T patients would like to be more involved in the decision-making process of their healthcare, but few patients are having the conversations with their doctors needed to achieve this goal.
Lymphoma Coalition advocates for better engagement of patients with their CAR-T providers, to ensure that stronger patient-centred healthcare is provided.
April’s Top Academic Articles
COVID Related Research Articles
Two treatments are coming to market which have received a lot of attention.
- A new treatment option for newly diagnosed DLBCL: In previously untreated diffuse large B-cell lymphoma (DLBCL) patients, a Polivy regimen extended the time to cancer progression or death over the standard-of-care treatment known as R-CHOP. Find out more HERE .
- Yescarta® becomes first CAR T-cell therapy approved in second line treatment for relapsed / refractory large B-Cell lymphoma. Find out more HERE .