We are proud to welcome a new member to our network! Please join us in welcoming The Brazilian Lymphoma and Leukemia Association (ABRALE), our first member from Brazil!
The Brazilian Lymphoma and Leukemia Association (ABRALE) has the mission of offering help and mobilizing stakeholders, so that all people with cancer and blood diseases have access to the best treatment. Its structure is based on four main pillars: Patient Support, Public Policies & Advocacy, Education & Information, and Data Research & Monitoring. In this way, it is possible to have a broad view of health, which permeates individual and collective needs in oncological care.
Deborah’s journey with Chronic Lymphocytic Leukemia (CLL) began in 2004 when she received the life-altering diagnosis. Her story is one of resilience, advocacy, and unwavering commitment to improving the lives of CLL patients. As she embarks on her retirement, we take a moment to celebrate her remarkable contributions to the CLL community.
Diagnosed with CLL in 2004, Deborah remains on Watch and Wait. She was told by her family doctor that she had the ‘good’ cancer and not to research on the internet. She became an advocate for CLL patients as a founding member of the Chronic Lymphocytic Leukemia Patient Advocacy Group (CLLPAG) which later became CLL Canada. She has been a Co Chair, Chair and Acting Chair of the Board since CLLPAG formalized in 2007 and is now a Honourary Board member Ex-Officio.
Deborah built the CLLPAG members database into a tool that is used for surveying International CLL Patients and their caregivers to prepare patient submissions for drugs. She initiated the E-Bulletin that is sent to CLLPAG members. She has been on the organizing committee of five International CLL Educational Conferences (CLL Live) presented for CLL Patients, their caregivers and Health Professionals in cooperation with Juravinski Cancer Centre, Hamilton, Ontario and The Leukemia & Lymphoma Society of Canada and/or Lymphoma Foundation Canada (now Lymphoma Canada).
In 2018, Deborah’s advocacy journey took a new turn as she joined CLL Advocates Network (CLLAN). In her role as CLLAN Steering Committee member – besides wanting to ensure that Canadian CLL patients have access to international information and standards for CLL treatment – she always advocated for the best possible care and support for CLL patients worldwide.
As Deborah enters retirement, her impact on the CLL community remains immeasurable. She has shown that even in the face of adversity, one can make a difference and be a source of hope for others. Deborah’s retirement may mark the end of one chapter, but it also heralds the beginning of a new one, as her legacy continues to inspire and bring positive change to the CLL community.
We wish her a retirement filled with joy, peace, and all the happiness she deserves. Congratulations, Deborah, on a well-deserved retirement!
We are excited to have Peterjoin our Steering Committee, and we look forward to moving the mission of CLLAN forward with Peter’s help.
Peter joined CLL Advocates Network´s Steering Committee in October 2023. Unexpectedly diagnosed with CLL in 2019, Peter turned his public contribution attention to the CLL community.
He is vice chair and treasurer of CLL Canada, an advocacy organization that provides education to improve access to health care that will aid Canadians affected by Chronic Lymphocytic Leukemia (CLL) and Small Lymphocytic Lymphoma (SLL).
He has been active in growing the CLL Canada membership and influence through marketing activities, including annual CLANN campaigns recognizing World CLL Day. Most recently he spoke at the Chronic Lymphocytic Leukemia research meeting in Winnipeg, Canada.
He has been involved in a number of CLLAN activities.
We are excited to have Johannes join our Steering Committee, and we look forward to moving the mission of CLLAN forward with Johannes’s help.
Johannes joined CLL Advocates Network´s Steering Committee in October 2023. He lives in Germany and was diagnosed with CLL in 2020. While on Watch & Wait the disease progressed quickly. In 2022 he started treatment within a clinical trial. After one year his CLL was MRD negative and he is since back on Watch & Wait.
After having been active in various management positions in global IT companies for 35 years, Johannes´ patient advocacy career started shortly after having been diagnosed. He serves as member of the Patient Advisory Council of the German Cancer Research Center (DKFZ), member of the Working Group for Development of National Strategy for Gene and Cell-based Therapies, Patient Advisor for Clinical Trial Development and a variety of other patient focused initiatives. Johannes is also a strong supporter of secondary use of patient data for cancer research in the context of the European Health Data Space (EHDS). This is a topic very close to his heart since – provided it is done right – it will accelerate access to new, more powerful therapies.
Johannes has significantly contributed to numerous CLLAN activities such as ICBCC, CLLAN Advocacy Toolkit, etc. in the past and has represented CLLAN at conferences, Advisory Boards and training courses. We are proud that Johannes has accepted our offer to join the CLLAN Steering Committee and look forward to benefitting from his vast knowledge, professionalism, dedication and proactiveness in our joint aim of further developing the network.
We are pleased to announce that the long-awaited Global Patient and Carer Experience Survey Report 2021-2022 is now published and released on our website.
We’re grateful to the 2,646 leukemia patients and 571 carers from a total of 87 countries that who were willing to complete the surveys. This participation from diverse cultures, economies, and health systems, provides CLL Advocates Network and its partners with insights to support our global networks.
We wish to thank all those individuals that took the time to complete any of the two surveys. This report is YOURS! Thank you for contributing to this important piece of evidence!
In 2021-2022, ALAN, CLLAN and CMLAN had ran the first global leukemia experience survey, collecting over 2600 responses from patients and 580 responses from carers around the world. Some results have been presented at conferences as abstracts and posters and we also used those data to shape the 2023 survey.
The questionnaire is about diagnosis, care and treatment for leukemia. Its purpose is to provide information to help us understand the key issues, experiences, and unmet needs for leukemia patients.
Our aim is to understand the key issues, experiences and unmet needs for leukemia patients and understand how things are changing/evolving over time.
How you can help? To achieve our ambition, we are asking for your help. Please can you share the survey link to your leukemia membership, through social media, newsletters and mailing lists.
The more people we can reach, the better the data will be. In order to make the survey as accessible as possible, we translated it in various languages: English, Brazilian Portuguese, Czech, Danish, Dutch, French, German, Hebrew, Italian, Korean, Simplified Chinese, Spanish and Russian.
Who should complete the questionnaire? This questionnaire can be answered by anyone aged 18 and above directly or indirectly affected by a diagnosis of leukemia, whether this is somebody who has received a diagnosis or who is / has been a carer to someone with a diagnosis. Two question sets have been designed, one for patients, and one for carers. Each of these surveys will take 20 to 30 minutes to complete.
We need your help: Please share the survey link within your community!
CLL Advocates Network is excited to unveil the completion and release of the “Fast Facts for Patients – Chronic Lymphocytic Leukemia” booklet.
The development of this booklet was a collaborative effort involving esteemed professionals and experts in the field of chronic lymphocytic leukemia (CLL). The booklet was co-authored by Kathryn Huntley (CLL Advocates Network Steering Committee Member), Professor Anna Schuh (University of Oxford, UK) and Dr Alessandra Tedeschi (Grande Ospedale Metropolitano Niguarda, Italy) and published by Karger Publishing, an independent, family-run, globally active publishing house in health sciences. Medical writing support provided by Catherine Richards Golini. Many thanks also go to Pat Boling, Leanne Kennedy, Giles Purbrick, and Michelle Sutherland for their contributions.
The primary objective of the “Fast Facts for Patients – Chronic Lymphocytic Leukemia” booklet is to empower individuals with CLL with comprehensive knowledge about their condition and treatment options. By equipping patients with information, the booklet aims to enable more meaningful conversations between patients, their medical teams, and their families. One of the valuable features of the booklet is the provision of spaces on its pages, allowing readers to organize their notes and formulate pertinent questions to discuss with their healthcare providers.
This informative resource can be accessed for download:
To order printed copies / hardcopies of the booklet, please click HERE.
It’s important to note that the information in this booklet is general and if you have any concerns about your health, you should speak directly with your doctor or healthcare team. This booklet serves as a supportive resource, offering a foundation of knowledge to enhance patients’ ability to engage actively in their healthcare journey.
In a world where medical information is continually evolving, the “Fast Facts for Patients – Chronic Lymphocytic Leukemia” booklet stands as a beacon of accessible and reliable information for individuals navigating the complexities of CLL.
CLL Advocates Network extends its gratitude to all contributors and partners who have made this valuable resource a reality.
Every 1 September, the global CLL community unites to raise awareness about chronic lymphocytic leukemia (CLL) and give those affected by a diagnosis of CLL a much needed voice. On World CLL Day we come together to improve understanding of the vulnerability of CLL patients and the challenges involved in living with CLL.
Under the hashtags #WCLLD23 #WithTeamCLL and #MentalHealth we focus on the mental health challenges of those living with CLL. Due to a high degree of uncertainty given the challenging nature of the disease, mental health issues and the impact of living with a chronic condition such as CLL are very real. We want to spot a light on the challenges that CLL patients encounter during the full pathway of their disease – these are particularly high during Active Monitoring (“Watch & Wait”). Living with the immune challenges of CLL can also add emotional and psychological distress.
Alongside appropriate care, having access to reliable resources and connecting with others can help patients live better with this chronic, incurable cancer. On this #WCLLD23 we make a stand for not leaving patients alone with mental health issues – no one should have to walk alone!
CLL patients need support, information and connection.
Join us and help spread the message in the lead-up to World CLL Day 2023 and on 1 September 2023!
On the dedicated Word CLL Day website you can find downloadable materials, online resources as well as information on how you can get involved and what you can do in the lead-up to #WCLLD23.
A campaign toolkit has been developed specifically for WCLLD23. The 2023 campaign materials are freely available and shall help you develop your own activities and actions around World CLL Day on 1 September 2023. We have prepared a set of visuals that you can share on your social media channels and a selection of editable Canva assets for you to adapt for your own use.
Please spread the word and let other stakeholders and your clinical community know about World CLL Day and ask them for their active participation by building WCLLD into their communication plans!
World CLL Day is a great way of kicking off Blood Cancer Awareness Month for the CLL community. It will help build momentum for the CLL community on World Leukemia Day on 4 September and World Lymphoma Awareness Day on 15 September.
THANK YOU FOR JOINING WORLD CLL DAY 2023 AND HELPING SPREAD THE MESSAGE OF AWARENESS!
Under the motto “There is no shortcut to knowledge”, the Workgroup of European Cancer Patient Advocacy Networks (WECAN) organized the 2nd WECAN Academy, a face-to-face training event held in Frankfurt (Germany) from 1-4 July 2023, with the goal of addressing the educational needs of the cancer advocacy community. WECAN is a network of leaders from over 20 cancer patient umbrella organisations active in Europe. The WECAN Academy is THE leading capacity-building event for cancer patient advocates.
Over 100 European patient advocates participated in this year´s WECAN Academy and received comprehensive training in advocacy tools, skills, and various important topics such as healthcare systems, policy and access, research, and data.
The WECAN Academy featured two significant capacity-building programs for patient advocates with a total of 3 tracks and more than 25 sessions:
WECAN Smart Start: This program focused on training individuals new to patient advocacy, providing them with the knowledge and skills necessary to initiate and develop national non-profit patient groups.
WECAN Masterclass on Patient Advocacy: Designed for experienced patient advocacy leaders, this program offered advanced training to further enhance their advocacy skills and expertise.
WECAN had accepted and hosted six CLL Advocates Network nominees:
On Saturday 10 June, CLL Advocates Network and AstraZeneca hosted a “Patient Advocacy Exchange – Compromised: Uncovering the immune-related challenges facing people with CLL”.
This hybrid event brought together patient advocates, representatives of CLL concerned patient advocacy groups, members of clinical community and those with an interest in supporting patients with CLL.
90+ attendees from 60+ countries, including in person and virtual attendees, attended the meeting to:
Discuss insights and recommendations from “Compromised”: Uncovering the immune-related challenges facing people with chronic lymphocytic leukaemia” White Paper co-developed by CLL Advocates Network towards reshaping policy and practice.
Collaborate with patient advocates, patient advocacy organisations and the clinical communities to prioritise recommendations and associated call to actions
Explore the emotional and mental health impacts of CLL throughout the patient pathway
Consider possible advocacy initiatives to improve patient outcomes in CLL
This meeting provided a great opportunity to share information on how advocacy can support improvements in care and empower patients with CLL.
Huge thanks to our speakers Nick York, CLLAN Chair (UK); Professor Paul Moss, Professor of Haematology within the Institute of Immunology and Immunotherapy at the University of Birmingham (UK); Christina Karamanidou, CERTH (Greece); Natacha Bolaños, Head of Membership and Alliances, Lymphoma Coalition (Spain); Kathryn Huntley, General Manager, Leukemia Foundation (Australia); Zack Pemberton-Whitley, CEO Leukaemia Care (UK); and Dr Mervat Mattar, Haematologist, Cairo University (Egypt).
The event RECORDING will be available for viewing soon!
