CLF 2023-24 Impact Report

Founder Foreword

Together we have achieved remarkable milestones and forged enduring partnerships that continue to drive positive change in the field of lymphedema.

I’m pleased to share with you our inaugural impact report. This summary of our activities over the past year stands as a testament to the unwavering commitment of the Canadian Lymphedema Framework and its collaborative partners to the advancement of lymphedema education, awareness, research, and care across Canada

More than one million Canadians suffer from lymphedema/ chronic edema, while most remain undiagnosed and/or untreated. Lymphedema’s impact is profound, often extending far beyond physical discomfort with emotional, social, and economic burdens. Amidst these challenges exists tremendous opportunity for progress and transformation.

Within the pages of this report you will find a comprehensive overview of our collective efforts over the past year. From advocacy initiatives to support for research, our educational outreach work and contributions to clinical advancements,

Dr. David Keast Co-Founder, Co-Chair Canadian Lymphedema Framework

each endeavour outlined herein represents a critical step forward in our shared mission to improve the management of lymphedema and to ensure that comprehensive treatment is accessible to all persons across Canada.

None of this would be possible without the dedication and collaboration of our diverse network of stakeholders - including persons living with lymphedema, their caregivers, healthcare professionals, researchers, policymakers, and industry partners. Together we have achieved remarkable milestones and forged enduring partnerships that continue to drive positive change in the field of lymphedema.

Our work is far from over. As we look ahead, let us continue to strive for excellence, innovation, and inclusivity in all that we do across our education, research, and partnership initiatives.

Spring

2023/2024 Published Pathways, Pathways Content, Readers From Around the World

Education Initiatives

University of Alberta Lymphedema and Chronic Edema Management Course, IMD Health, HP Toolkit, Physicians’ Education Card, Patient Lymphedema Education Pamphlet, Lymphedema Learning Library Online

Provincial and International Lymphedema

Associations, Partner Organizations, Conference Sponsors & Exhibitors, Advertisers, Donors

Board

Directors, Editorial Board, Education Working Group, Staffing, Support & Volunteers

Who We Are & What We Stand For

Founded in 2009, the Canadian Lymphedema Framework (CLF) is an academic and patient stakeholder collaboration promoting lymphedema research, best practices, and clinical development.

Our Mission:

To improve the management of lymphedema and related disorders in Canada. In collaboration with the International Lymphoedema Framework (ILF) and other national frameworks, we will contribute to the global advancement of lymphedema care.

Our Vision:

Is that comprehensive treatment for lymphedema and related disorders will be accessible to all persons across Canada.

We deliver on our vision and mission through the development of projects in the areas of education, research, and partnerships across Canada.

The CLF is partnered with 8 provincial lymphedema associations across Canada.

What We Have Accomplished

Successful 2023 National Lymphedema Conference

Agreement in place to co-host 2025 ILF Conference in Canada

Celebrated 12 years of Pathways Magazine

Secured Heritage Grant to expand Pathways distribution

Partnered with IMD Health to deliver lymphedema education

Delivered World Lymphedema Day campaign

University of Alberta microcredential course collaboration

Developed and distributed Patient Education Pamphlet

Continued collaborative partnerships with ILF, BLS, ALA, NLN, LE&RN, ProLymph and Provincial Lymphedema Associations

Engaging with Patients & Healthcare Professionals

Through the CLF’s social media channels, website, and eNews campaigns we connect with patients, health professionals, researchers, policy and decision makers, industry stakeholders and the public to

help

raise

awareness around the needs of those affected by lymphedema.

Social Media

We leverage social media for education campaigns to amplify reach, engagement, and impact; ultimately contributing to greater awareness, understanding, and positive change across Canada and around the globe.

It is estimated that more than one million Canadians are impacted by lymphedema and/or chronic edema. Most remain undiagnosed and/or untreated.

Over aunched three new educational campaigns to our 2,400+ followers, with a global reach of 24,100+ across all our digital platforms:

Lymph Knowledge. Facts about lymphedema to empower patients to actively manage their lymphedema treatment and confidently communicate with their healthcare providers.

Skin Care Tips. Tips for those living with lymphedema on how to take care of their skin, to lower your risk of developing an infection.

Did You Know? Provide facts on treatment disparity to empower healthcare professionals to explore futures in lymphedema treatment and care expertise.

eNews

The CLF produces routine email campaigns for distribution to our mailing list of 4,600+ recipients. Each campaign is carefully composed to deliver the latest news in lymphedema research, education, events, and partnering organizations initiatives.

In the last year, the CLF sent 22 email campaigns with 35,000+ opens/reads by recipients.

Sharing information from partner organizations serves as a catalyst for knowledge exchange, empowerment, networking, community engagement, and quality improvement within our community, contributing to its growth and vitality.

Public Inquiries

The CLF is dedicated to assisting the public by handling inquiries via phone and email. We provide support and information to anyone with an interest in learning more, including those affected by lymphedema and the health professionals who care for them.

This past year, the CLF handled 177 phone inquiries and 307 email inquiries.

CLF Website

Our website, www.canadalymph.ca, is a comprehensive hub dedicated to raising awareness, providing education, and fostering community for patients, caregivers, and health professionals.

Our website is a wealth of information about lymphedema, covering its definition, best practices, and strategies for taking control of your health. Additionally, users can access Pathways magazine, stay informed about the latest news and events, and explore our exclusive Online Marketplace, which includes products and services from our partner organizations, sponsors, advertisers and exhibitors.

Over the past year, our website has received over 61,000+ website visits and has reached audiences from 151 countries.

2023 National Lymphedema Conference

Our national conferences bring together diverse groups of professionals, patients, advocates, and researchers to share their knowledge and experience in the field of lymphedema.

Conference Success

The 2023 National Conference was our most successful event to date. We hosted 311 attendees to see presentations by 32 speakers and visit with 37 industry sponsors and exhibitors from across Canada and around the world.

We led conversations on cutting-edge topics, created spaces to encourage valuable interactions between industry and consumers, established atmospheres conducive to staying up to date on the latest research and advancements, and sparked attendees' imaginations with new insights into lymphedema treatment, care, and management.

Keynote Speakers

We featured two new keynote speakers from outside the lymphedema care community. Dr. Denise Campbell-Scherer shared insights on obesity, and Dr. Celine Koryzma presented on mindfulness and self-compassion.

Recent evidence suggests a correlation between obesity and lymphedema. While Dr. Campbell-Scherer may not specialize in lymphedema care, we recognize that many lymphedema-related healthcare professionals encounter patients with obesity in their clinical practice. Addressing weight-related issues effectively can positively impact lymphedema management for these patients.

In addition, we recognize the significant emotional burden carried by individuals managing a chronic health condition. It was important for us to invite a speaker like Dr. Koryzma who could address this and equip attendees with the necessary tools for sustainable health behaviour changes and overcoming barriers on topics like body acceptance, mindfulness and self-compassion.

Including speakers from diverse backgrounds not only enhances the conference experience and fosters interdisciplinary collaboration and learning, but also reinforces our partnerships with other organizations, advancing lymphedema education and research to better support people living with lymphedema in Canada.

Our 2023 Conference included some first-time topics for us, aiming to broaden the discourse and deepen understanding of the patient experience within our community:

What I have learned: Patent-to-Patient Advice. Interactive workshop with lymphedema patient experts aimed to share experiential knowledge and develop person-centred care recommendations to better support people living with lymphedema.

Amazing conference - great selection of keynote speakers, breakout sessions...covered a variety of interesting and relevant topics (something for everyone!).”

Conference Program

Our Scientific Committee works to structure our conference program to encompass diverse viewpoints, spanning from research and treatment to the patient experience and sharing professional expertise. Our aim is for the conference to provide a focal point for these discussions, with the topics explored during sessions continuing to resonate long after the conference concludes. Watch for follow-up articles from many of our conference speakers in the coming issues of our Pathways magazine.

How does lymphedema and its care impact body image and sexuality? Discussion on modern, holistic perspectives on sexuality and strategies for reclaiming a sense of wholeness despite lymphedema. Presented by a panel of clinicians examining how therapists can incorporate approaches to the effects of lymphedema on body image and sexual identity into their practice.

Fitters' Forum: Interactive roundtable discussion for garment fitters. A roundtable discussion for compression garment fitters to network, discuss best practices and share their experiences.

Surgical management of lymphedema. A panel presentation on the latest surgical options available for lymphedema including preventative techniques, physiologic techniques, and excisional options.

World Lymphedema Day & March Lymphedema Awareness

Every year the CLF participates in the global lymphedema community's efforts to raise awareness, advance education d f ili engagement oppor individuals affected including patients, and healthcare pro

Spring Pathways Comp

To celebrate World Lymphedema we gift the lymphedema commun access to read the digital edition o

This year, our Spring issue has rea exceeding 12,000+ readers acros

Pathways is Canada's only lymph and is the largest communications lymphedema education.

Its publication is made possible through collaborative efforts with lymphedema experts and support from industry partners, sponsors, and advertisers, as well as from a Canadian Heritage Aid-to-Publishers grant.

Research Update

We are partnering and participating in research initiatives that are pivotal to improving the lives of those who are living with lymphedema.

Canadian Clinical Practice Guideline:

Best-practice management of breast cancer-related lymphedema (BCRL)

In 2019, the CLF began an initiative in collaboration with Alberta Health Services (Guideline Resource Unit), the Canadian Physiotherapy Association Oncology Division, and the University of Alberta Cancer Rehab Clinic Laboratory under Dr. M. L. McNeely, to update and further develop the national guidelines for best-practice management of BCRL in Canada.

The primary benefit of this clinical guideline will be to improve the quality of care of individuals with breast cancer-related lymphedema. Findings will be disseminated at national and international conferences and through webinars and educational videos hosted on the websites of the supporting organizations.

Canadian Lymphedema Prevalence Data Update

An update to the Canadian Lymphedema Prevalence Data is currently in progress with plans to publish the revised data in the coming year. Stay tuned for its release, as it will offer important updates for healthcare professionals, patients, and researchers alike.

Patient Registry in Canada

Lymphedema patients are underserved in Canada’s healthcare system. Patients are being cared for in a variety of settings such as hospitals, wound clinics and rehabilitation centres with little information on their outcomes and rarely is the information shared within the healthcare system.

The CLF proudly supports Dr. Spencer Gibson, a member of our Board of Directors, who is currently working to develop a national registry/database for Canada.

This could provide information on the prevalence of lymphedema, types of treatment, and other factors contributing to lymphedema, such as obesity or cancer.

Pathways Magazine

Pathways is an official publication of the Canadian Lymphedema Framework. It is Canada’s only lymphedema magazine and addresses the need for lymphedema awareness and education among patients those at r

...The CLF has set an important example of how a new lymphedema framework can work with existing lymphedema patient and clinical organizations to unite in one voice for furthering lymphedema care in Canada ”

offatt, PhD, Chair of the L h dema Framework

Pathways Content

Contributors to Pathways include dedicated opinion experts in the field of lymphedema who help advance topics that address the critical issue of lymphedema care. Topics include:

Clinical Perspectives

Therapist Perspectives

Research Perspectives

Patient Perspectives

Compression Garments

Ask the Expert

Advocacy

Education

Helpful Suggestions

Readers From Around the World

The CLF’s reach has grown substantively through its online distribution of Pathways magazine, with readership emerging across Canada and internationally.

Pathways is circulated in 26 countries.

Canada

United States

Ireland

Germany

Brazil

Austria

Australia

Denmark

Spain

France

Belgium

Brazil

South Africa

South Korea

Singapore

Lebanon Netherlands

Czechia

Portugal

Cyprus Uganda

United Kingdom

United Arab Emirates

Education Initiatives

An estimated one million+ Canadians are impacted by lymphedema/ chronic edema and most of these Canadians remain undiagnosed and/or untreated.

In Canada there is a need for more physicians and healthcare workers to diagnose and treat individuals living with lymphedema. Patients require comprehensive understanding of lymphedema, including what it is, how it affects their body, how to effectively communicate about their condition with their healthcare team, and how to advocate for their needs.

Recognizing these gaps, the CLF has strategically partnered with other organizations to develop programs and resources aimed at addressing these critical education and awareness needs and bridging existing disparities in lymphedema care and education.

University of Alberta Lymphedema & Chronic Edema Management Course

This online, microcredential course was co-developed with the U of A to offer a medical introduction to lymphedema and chronic edema management aimed at any healthcare clinician who may see individuals experiencing chronic edema.

The course provides learners with a comprehensive overview of the complex aspects of lymphedema/chronic edema and presents clinical management approaches for these conditions.

This past year, we have welcomed 66 students from 9 provinces (ON, BC, AB, MB, SK, QC, PEI, NL, NS), plus 2 international students from St. Lucia and Mexico.

IMD Health

CLF resources are now available on the IMD platform - an online education resource that includes fact sheets for healthcare professionals, patient guides and professional tools. Healthcare providers can self-educate and send patients home with a curated collection of resources based on each patient’s unique needs. Through our partnership with IMD Health, high quality educational materials are easily accessible for healthcare providers to reference and implement in their daily practice.

8,500+ users, across 10 provinces, 1 territory, and 30 states have viewed CLF resource packages on the lymphatic system, on lymphedema and its diagnosis and treatment, and on related topics like exercise, skin care, finding local lymphedema support, and more.

Health Professionals Toolkit

This resource has been developed in collaboration with our Education Working Group. Currently, with 110+ subscribers across Canada, this toolkit provides:

Lymphedema assessment tools and related case studies by fellow lymphedema professionals

PowerPoint slides, presentations, and patient photographs to support lymphedema education efforts

Selected lymphedema articles, such as research reviews and video presentations by leading experts

Physicians Education Card

Dr. David Keast and Dr. Anna Towers developed this resource through the CLF as an education tool aimed at physicians to provide best practice recommendations for the identification and treatment of lymphedema. While originally developed for a print circulation project, this valuable resource has now been digitized and made available for viewing and download by visiting our Lymphedema Learning Library online.

The Physicians Lymphedema Education Card has since been viewed by over 460 users with 89 downloads.

Patient Education Pamphlet

The CLF, in a 2018 collaborative education project with our volunteer Education Working Group, Medical Advisory Committee, and generous funding support from the Alberta Lymphedema Association, developed and printed patient education materials to increase public awareness and patient care of lymphedema. The pamphlet was newly updated in January 2024 and has, so far, distributed 11,500+ copies across Canada as a part of our World Lymphedema Day campaign.

Lymphedema Learning Library Online

The CLF leverages the online platform ISSUU to collect digital stacks of previous Pathways articles, and CLFdeveloped resource handouts, to digitally distribute to our audience. We have also used this opportunity to partner with organizations like Obesity Canada and Melanoma Canada to increase awareness of lymphedema to their audiences. Topics include:

Introduction to Lymphedema

Cancer-Related Lymphedema

Melanoma and Lymphedema

Obesity and Lymphedema

Lipedema Awareness

Our Partnerships

We couldn’t do what we do without the support of and collaboration with our provincial associations, partner organizations, sponsors, advertisers, exhibitors and donors. Thank you for your continued support.

Provincial Associations

International Lymphedema Organizations

Partner Organizations

2023 National Lymphedema

Conference Sponsors & Exhibitors

2023-24 Pathways Advertisers

Bauerfeind

3M

Essity

Juzo

Medi

Klose Training

L&R Canada

Dr. Vodder School International

Lunatik Athletiks

Canadian Orthopaedic Supply

Pascoe Canada

Rockmount Medical Solutions

Prairie Wear

Wounds Canada

Lymphedema Association of Ontario

Canadian Skin Patient Alliance

ProLymph

Quart Medical

Klose Training

PeriKit

Linotrade Ltd.

Jean LaMantia

Neubourg Healthcare

Melanoma Canada

Obesity Canada

LANA

ProLymph

Canada Cares

Amoena Canada

Linotrade Ltd.

2023-24 Donors:

Breast Rehab

CertiCare Medical Garments

Jeannine Dupuy

Juzo Canada

Angela Dunphy

Linda Henry

Joni Jensen

Catherine Kelland

Marjory Kelland

Stephen Kelland

Anna Kennedy

Lymphology Skincare

Paradigm Medical

Wear Ease Inc.

Dr. Vodder School

Prairie Wear

PLANTiful Apothecary

Wounds Canada

Obesity Canada

Care-Med, Soft Touch Mastectomy

Lymphatic Lifestyle Solutions

ACOLS Academy of Lymphatic Studies

Bev Lanning

Heather Lavallee

Donna McArdle

Elaine McArdle

Bradley McNeely

Stefanie Piatek

Mehdi Pourasadi

Thomas Sheffield

Barbara & Charles Sweet

Charlene Thibideau

Kathy Weatherly

The CLF would like to acknowledge the many anonymous donations that we have received throughout the past year.

Our People

The CLF’s strength lies in its committed volunteers, people who are passionately devoted to the CLF’s mission and vision and who donate their time, expertise, and resources to this important cause.

Board of Directors

David Keast, MSc Dip Ed MD CCFP FCFP(LM) Co-Chair

Catherine C. McCuaig, MD, FRCPC Co-Chair

Siba Haykal, MD, PhD, FRCS(C), FACS Director

Spencer B. Gibson, PhD Director

Maryse Beaumier, BNSc, MSc, PhD Director

David Keast

Catherine C. McCuaig

Spencer Gibson

Siba Haykal

Maryse Beaumier

Pathways Editorial Board

Anna Kennedy

Editor in Chief

Mei Fu, MT, MSc Editorial Board

Anna Towers, MD FCFP Editorial Board

Lori Radke, PT, CDT Editorial Board

David Keast, MSc Dip Ed MD CCFP FCFP(LM) Editorial Board

Executive and Operational Staffing

Bonnie Baker Executive Director Grace Neumayer Marketing Manager

Rachelle McDonald Bookkeeping

Bonnie Baker Grace Neumayer

Education Working Group

Tracy Gardikioits CLF Board Liason Sandra MacDonald Co-Chair

Pam Hammond Co-Chair Marize Ibrahim

Sonja Redden Linda (Koby) Blanchfield

Support & Volunteers

Bisa Dobson

Pam Hammond Vivian Dim

Lori Radke Marize Ibrahim

Audrey Wall

Juliana Conte Heather Watt

Amanda Sobey

Jennifer Albert Shirin Shallwani Marie-Eve Letellier

Anna Kennedy Anna Towers

Lori Radke

Mei Fu

Visit our website canadalymph.ca to learn about our mission, vision, and the work we do in partnership with our provincial lymphedema associations, partner organizations and the International Lymphoedema Framework (ILF).

Subscribe to our email news and follow us on our social media channels for news, announcements and the latest on lymphedema research, education, partnerships, and events.

Scan or click to follow the CLF online and to subscribe to our eNews!

@canadalymph.ca

CANADIAN LYMPHEDEMA FRAMEWORK

EDUCATION. RESEARCH. PARTNERSHIPS.