ECZEMA SOCIETY OF CANADA · and content on eczema management and the disease state. Support Canadians of all ages living with all types of eczema, including lifelong sufferers and

PROGRAMS & SERVICES REPORT

OUR MISSION IN ACTION

2017/ 2018

ECZEMA SOCIETY OF CANADA

ECZEMA SOCIETY OF CANADA2

THERE IS HELP AND THERE IS

HOPE

PROGRAMS AND SERVICES REPORT 2017/2018 OUR MISSION IN ACTION 3

A MESSAGE FROM THE EXECUTIVE DIRECTOR

Eczema patients have suffered in silence for too long, and the disease is finally getting the attention it deserves. With new treatments coming to Canada in the next year, and many new treatments in development, we are truly on the edge of a new era in eczema care.

This year we helped thousands of patients with one-on-one personalized support, through our volunteers, educational resources, and live patient events across the country.

We continued to disseminate our health care provider atopic dermatitis management recommendations with publications aimed at primary care physicians and pharmacists, along with certified Continuing Medical Education programs for physicians, nurse practitioners, and pharmacists in both atopic dermatitis and chronic hand eczema.

Our biggest achievement of the year was our Quality of Life survey, which revealed startling statistics on the deep impact of living with this chronic disease.

This year marks the 20th anniversary of the Eczema Society of Canada, a grassroots organization that started as a local patient support program in Toronto and has since grown to a national organization fulfilling our mission and impacting change for patients. It is our honour to represent eczema patients in Canada and continue to work to improve their lives.

Amanda Cresswell-MelvilleExecutive Director, Eczema Society of Canada

MISSIONEczema Society of Canada (ESC) is dedicated to meeting

the needs of those suffering with eczema through support, education, raising awareness, advocating for patients, and ongoing research

activities. As well, we have a strong commitment to the continuing support of the medical community.

SUPPORTEDUCATIONAWARENESSADVOCACYRESEARCH


Provide evidence-based, comprehensive information and content on eczema management and the disease state.

Support Canadians of all ages living with all types of eczema, including lifelong sufferers and the newly diagnosed.

Advocate for patients and promote access to timely and appropriate medical care.

Support health care providers with educational materials and support programs to help patients access

better care and outcomes.

Raise awareness among eczema sufferers, caregivers, health care providers and the general population about

eczema management and the burden of the disease.

Support research to advance eczema management.

OUR STRATEGIC GOALS

The itch and pain is

sometimes too much.

It consumes me and my life.

My eczema is covered by

my clothing, I never reveal

it, and no one knows the

extent of my suffering.

I suffer alone.


1 Goal: Improving the lives of Canadians suffering with eczema

18 medical contributors

Board of6 directors

Team of 8 talented and dedicated professionals

More than one million annual views of eczemahelp.ca

Held more than 30 patient events

in the past six years

More than30,000

ESC subscribers 10,500 +

Facebook followers

15 Multilingual Support Volunteers

across Canada

1 Canadian Dermatology Association Public Education Award

NEWS

85,000,000 + impressions of our Quality of Life

media campaign

4 research grants awarded

BY THE NUMBERS


PROGRAMS & SERVICES

SUPPORT

• One-on-one telephone and e-mail support to eczema sufferers and caregivers

• Support Volunteers from across the country offer e-mail and telephone support in five languages, as well as in-person support groups

• Provided a grant to Camp Liberté to support campers with severe atopic dermatitis

• Psychological support resources

• Eczema Care Network, an online resource, helps patients and family physicians find specialists across Canada

• Faces of Eczema photo book featuring a diverse group of brave Canadians offering a snapshot of their life with eczema

EDUCATION

• Distribution of educational materials to family physicians, paediatricians, dermatologists, pharmacists, and directly to eczema sufferers

• Annual Life with Eczema patient events held across Canada, featuring dermatologist speakers, exhibits, and Q&A

• Distribution of electronic newsletters with eczema research articles, updates on treatment advancements, “Ask the Expert” column, and patient stories

• Connected with with hospital programs, pharmacies, and public health nurses on eczema education programs

• Seal of Acceptance program

FACES OF ECZEMA

ECZEMA SOCIETY OF CANADA | SOCIÉTÉ CANADIENNE DE L’ECZÉMA

PROGRAMS AND SERVICES REPORT 2017/2018 9

HEALTH CARE PROVIDER EDUCATION

• Dissemination of a guiding document: Atopic Dermatitis: A Practical Guide to Management

• Published atopic dermatitis guidelines for pharmacists and primary care practitioners

• Published survey results in two documents, moderate-to-severe patient results in a Quality of Life Report and mild-to-moderate results in a Patient Insights Report

• Created and distributed resource chart: Topical Treatments for Atopic Dermatitis

• Exhibition to family physicians, dermatology nurses, pharmacists, dermatologists and paediatricians at medical conferences across Canada

• Hand eczema educational mailing program to health care providers across Canada

CONTINUING MEDICAL EDUCATION

• Educated 6000+ health care providers

with online continuing medical education

(CME) programs, including:

• Chronic Hand Eczema online CME program

• Atopic dermatitis online CME program

for primary care physicians

• Atopic dermatitis online CME program

for pharmacists

Speaking with your

support volunteer gave us

hope. We finally felt we

were not alone, and that

we could face this.

The Life with Eczema

events were so helpful in

getting my eczema under

control. Thank you for

your great work!


PATIENT EDUCATIONAL MATERIALS

• Managing Eczema Guide

• Hand Eczema Guide

• Ask the Doctor / Ask the Patient Series

• Topical Corticosteroids: Frequently Asked Questions

• Topical Calcineurin Inhibitors: Frequently Asked Questions

• Support for People Living with Eczema Guide

• Scratching the Surface: Eczema Care Information Sheet

• Eczema Assessment Sheet

• Easing up on Eczema: Eczema Education DVD

• Guide to Choosing Moisturizers and Cleansers

• Rub It In! Skin Care Charts

• Eczema School and Daycare Guide

• Children’s book Sometimes I am Itchy

• I Have Eczema cards

• Children’s Colouring Book

HEALTH CARE PROFESSIONAL (HCP) RESOURCES AVAILABLE

• Guiding document Atopic Dermatitis: A Practical Guide to Management

• HCP Guide to Managing Chronic Hand Eczema

• Resource chart Topical Treatments for Atopic Dermatitis

Atopic Dermatitis: A Practical Guide to Management

Miriam Weinsteina, MD, FRCPC [Writing Group Chair], Kirk Barberb, MD, FRCPC, James Bergmanc, MD, FRCPC, Aaron M. Druckerd, MD, FRCPC, Charles Lyndee, MD, FRCPC, Danielle Marcouxf, MD,

FRCPC, Wingfield Rehmusg, MD, MPH, FAAD, Amanda Cresswell-Melvilleh, BA, BEd.

aHospital for Sick Children, Toronto, Ontario; bUniversity of Calgary, Calgary, Alberta; cUniversity of British Columbia, Vancouver, British Columbia; dToronto Western Hospital, University Health Network, Toronto, Ontario and

Department of Dermatology, Brown University, Providence, Rhode Island; eUniversity Health Network , Toronto, Ontario; fCentre hospitalier universitaire Sainte-Justine, Montreal, Quebec; gBritish Columbia Children’s Hospital,

Vancouver, British Columbia; hEczema Society of Canada / Société canadienne de l’eczéma, Keswick, Ontario.

Reprint requests to: Eczema Society of Canada/Société canadienne de l’eczéma, 411 The Queensway South, PO Box 25009, Keswick, Ontario, L4P 4C2. Electronic mail: [email protected]

Funding Source: Eczema Society of Canada/Société canadienne de l’eczémaCopyright © by the Eczema Society of Canada / Société canadienne de l’eczéma July 2016. All rights reserved.

Second Edition

Health Care Provider Resource


SEAL OF ACCEPTANCE PROGRAM

We offer our Seal of Acceptance to products that are created for and/or intended for use by people with eczema. These products must meet specific criteria, undergo rigorous clinical testing and undergo scientific review to earn the Seal of Acceptance.

Products that are identified as ‘accepted’ by the Eczema Society of Canada are free of ingredients known to be irritating for sensitive skin, have undergone dermatologist formulation review, and have earned our Seal of Acceptance (SOA).

• Products that have earned the ESC Seal of Acceptance may use the Seal on products and in marketing materials

• The SOA review process includes rigorous dermatological review of products, formulation, and clinical data

• ESC identifies SOA products on its website, in educational print materials, in communications, and on social media

If you would like more information on earning the Seal of Acceptance for your products, contact Executive Director Amanda Cresswell-Melville for more information.

E-mail: [email protected] Phone: 1-855-ECZEMA-1

PROGRAMS AND SERVICES REPORT 2017/2018 13

RESEARCH

ESC has recently launched our competitive Research Grant Program and supported a number of research programs aimed at improving quality of life and better understanding this complex condition.

To learn more about the ESC Research Grant Program and how to apply, visit eczemahelp.ca.

Breakthroughs in eczema

research have led to new

treatment options. We are

indebted to the researchers,

as that’s where it all starts.facebook.com/EczemaSocietyofCanada

twitter.com/

@EczemaSocietyCA


ECZEMA AWARENESS

WE RAISE AWARENESS AMONG:

ECZEMA SUFFERERS

• Quarterly and special topic electronic newsletters

• Direct mail campaigns

• Patient events

• Website eczemahelp.ca

• Ongoing media campaigns

• Social media

PHYSICIANS & HEALTH CARE PROVIDERS

• Exhibitions and presentations at key conferences

• Providing educational resources

• Direct mail campaigns

• Hand eczema guidelines educational resource

• Continuing Medical Education programs

GOVERNMENT & KEY STAKEHOLDERS

• Raising awareness about the impact of eczema on patients and caregivers

• Advocating for patients

RECENT MEDIA• Allergic Living Magazine

• Best Health Magazine

• Calgary Herald

• Calgary Metro

• Canadian Living

• Canadian Skin Magazine

• CBC News

• CBC Radio

• CDA Awareness Campaign

• Charles Adler Show

• Chatelaine Magazine

• Chatelaine Online

• Chronicle of Skin & Allergy

• Dermatology Nurses Newsletter

• Edmonton’s Child Magazine

• Edmonton Journal

• Edmonton Metro

• Flare Magazine

• Globe and Mail

• Global News

• Global News Story (Canada Wide)

• My Skin Magazine

• National Post

• Ottawa Citizen

• Pharmacy Practice Magazine

• The Montreal Gazette

• The Province

• Today’s Parent

• Star Phoenix, Saskatoon

• Vancouver Sun

• Video News Release

• Windsor Star

• Yahoo! Video News Article

• Yahoo! Health


ESC EXPENDITURES

DONATIONS

• Eczema Society of Canada relies on corporate grants and private citizen donations to put its mission into action. All donations $20 and greater are eligible for an official tax receipt.

• Donations are accepted by cheque and secure credit card donations can be made online via PayPal at eczemahelp.ca.

To view our Financial Reports visit cra-arc.gc.ca. Charity Registration # 872216098RR001

We fulfill our mission thanks to volunteers, private citizen donors, and corporate donors. Corporate funding comes as unrestricted grants.

91% Charitable Program

9% Management & Administration

* 2016: Source—Canada Revenue Agency


QUALITY OF LIFE REPORT: MODERATE-TO-SEVERE DISEASE

Atopic dermatitis (AD) significantly impacts quality of life for sufferers. In late 2016 / early 2017 ESC endeavored to better understand the quality of life impact of AD and surveyed over 1000 Canadians living with the condition to gather data on impacts such as disease management, itch, impact on sleep, and mental health.

The Quality of Life Report: Moderate-to-Severe Disease details the survey findings specific to adults and children living with AD.

i

2016/2017 Survey Results

ATOPIC DERMATITIS QUALITY OF LIFE REPORT


— MODERATE-TO-SEVERE DISEASE —

ESC-QualityofLifeReport-EN-Final-20170629.indd 1 2017-06-29 3:00 PM


PATIENT INSIGHTS REPORT: MILD-TO-MODERATE DISEASE

While mild-to-moderate atopic dermatitis (AD) is often thought of as simply “dry, itchy skin”, we hear from patients that even mild or moderate AD can impact quality of life. Our Patient Insights Report: Mild-to-Moderate Disease sheds light on the challenges of living with AD and insights into the patient perspective on treatment challenges and fears, as well as burden of disease.


BOARD OF DIRECTORS

RACHEL ASINIWASIS MD, FRCPC (Dermatology)

Regina, Saskatchewan

JAMES BERGMANMD, FRCPC

(Allergy, Dermatology, Paediatrics) Vancouver, British Columbia

AMANDA CRESSWELL-MELVILLEHonours BA, BEd

Executive Director Toronto, Ontario

JOSEPH M. LAMMD, FRCPC (Paediatrics)

Vancouver, British Columbia

SIMON NIGENMD, FRCPC (Dermatology)

Montréal, Quebec

ARIMA VENTINBPhm, MBA

Toronto, Ontario

Improving the lives of Canadians living with eczema is at the core of our mission, and our team of talented

and dedicated professionals make that a reality.


MEDICAL CONTRIBUTORS

RACHEL ASINIWASISMD, FRCPC (Dermatology)

Saskatoon, Saskatchewan

KIRK BARBERMD, FRCPC (Dermatology)

Calgary, Alberta

JAMES BERGMANMD, FRCPC

(Allergy, Dermatology, Paediatrics) Vancouver, British Columbia

GILLIAN DE GANNESMD, FRCPC (Dermatology) Vancouver, British Columbia

PHILIP DOIRONMD, FRCPC (Dermatology)

Toronto, ON

AARON DRUCKERMD, FRCPC (Dermatology)

Toronto, Ontario

MARISSA JOSEPHMD, FRCPC

(Dermatology, Paediatrics) Toronto, Ontario

JOSEPH LAMMD, FRCPC (Paediatrics)


JANICE LEBLANCBFA, BEd, RP. DTATI, RCAT (Art Therapist)

Toronto, Ontario

CHARLES LYNDEMD, FRCPC (Dermatology)

Markham, Ontario

DANIELLE MARCOUXMD, FRCPC (Dermatology, Paediatrics)

Montréal, Quebec

SIMON NIGENMD, FRCPC (Dermatology)

Montréal, Quebec

JAGGI RAOMD, FRCPC (Dermatology)

Edmonton, Alberta

WINGFIELD REHMUSMD, FRCPC (Dermatology)

Vancouver, BC

SHAWN REYNOLDSPhD, R Psych

Edmonton, Alberta

NEIL SHEARMD, FRCPC (Dermatology, Internal

Medicine, Pharmacology) Toronto, Ontario

MELISSA SWEETBSc, MEd (Behavioural Therapist)

Newmarket, Ontario

MIRIAM WEINSTEINBSc, BScN, MD, FRCPC (Paediatrics)

Toronto, Ontario

IAN TIN YUE WONGBSc(Pharm), RPh


With the help of dedicated physicians and professionals, we are able to deliver evidence based, up-to-date disease

and treatment information to Canadians living with eczema.


411 The Queensway SouthPO Box 25009, Keswick, Ontario

L4P 4C2 Canada

[email protected]

eczemahelp.ca

Copyright © Eczema Society of Canada / Société canadienne de l’eczéma 2017. All rights reserved.

Documents

ECZEMA SOCIETY OF CANADA · and content on eczema management and the disease state. Support Canadians of all ages living with all types of eczema, including lifelong sufferers and