Copy
December 2020
View this email in your browser

DECEMBER TABLE OF CONTENTS

Happy Holidays from the Canadian Psoriasis Network!

As we come to the end of a tumultuous 2020, I would like to thank all our members for your interest in, and support of, our work. To the many of you who filled out our surveys, shared your feedback by phone or email, volunteered with us or donated, it’s because of you that we’re motivated and able to do the work that we do to advance psoriasis and psoriatic arthritis in Canada. 
 
CPN is coming out of 2020 as a strong and resilient organization that, despite disruptions, uncertainties, and setbacks due to the pandemic, is ready to welcome in 2021 with enthusiasm and gratitude for the work we’re planning. It’s through the work and support of our members and broader psoriasis community, volunteers, community partners, advisors and clinical network, donors and funders, staff, and Board that this is possible.
 
This edition of our member e-newsletter shares highlights from the last year as well as some of our plans for 2021 which are informed by you—our members. There will be many opportunities for you to be involved throughout 2021, so please stay tuned and continue to look out for our quarterly e-newsletters in your inbox. I also welcome your feedback directly at president@cpn-rcp.com.
 
On behalf of the Board and staff of the Canadian Psoriasis Network, I wish you and your families a peaceful, healthy, and restful holiday season. 
 
Sincerely,
 
Simmie Smith

President, Canadian Psoriasis Network

Reflecting on 2020

Despite the many uncertainties and obstacles that the pandemic has caused this year, we are pleased with our ability to adapt and continue to provide our programs and advance our work. The following recap provides some of our highlights from the last year.

Fall Webinar Series
 
In our 2019 member survey, we heard that more information about treatment options for psoriasis and psoriatic arthritis, and more information about healthy lifestyle and stress reduction would be most helpful to you.
 
Based on this feedback, we embarked on our first webinar series this past fall. The webinars and their recordings have reached over 350 people so far and have covered important topics such as psoriasis and COVID-19, diet, and mental health. If you missed a past webinar, you can watch them here

Have ideas for webinar topics in 2021? Share with us by emailing info@cpn-rcp.com.

Medical Student Roundtables
 
Our Medical Student Roundtables looked a little different this year as we moved to a virtual program. The program is designed to help equip Canada’s future healthcare providers with knowledge and understanding of psoriasis and its associated conditions. It does this by providing medical students from across Canada with the opportunity to hear a presentation from, and engage in a roundtable discussion with, a leading dermatologist and a patient. 
 
In 2020, three Roundtables were held for medical students at the University of Toronto, Queen’s University, and McMaster University, reaching over 90 medical students. 
 
We’re currently planning a session at Western University for 2021. If you’re interested in being a patient presenter for this program, please email CPN’s Executive Director directly at executivedirector@cpn-rcp.com.
Policy and Advocacy

CPN has also been actively involved in policy and advocacy activities in 2020. Highlights include submissions to the following consultations:

Thanks to everyone who filled out surveys to help inform these submissions!
 
Apart from policy consultations and health technology submissions, we have also been actively involved with the broader patient community to advocate for a stronger healthcare system. This includes partnering with other psoriasis and arthritis organizations, as well as with other non-communicable disease areas like oncology and mental health. 

For example, CPN joined our psoriasis and arthritis community partners to make an invisible disability visible on National Psoriatic Arthritis Day, including lighting up monuments in Canada. Most recently, CPN partnered in the 5th Annual Patients Redefining the Future of Health Care in Canada Summit that looks at the concept of Value-Based Health Care as a long-term strategy for improving patient care. A link to the recordings of the event will be posted on our website in the new year.
 
We’re also pleased to be increasingly involved with the global psoriasis community in order to build global awareness and advocacy about psoriatic disease. This year we were pleased to partner on a global effort to understand COVID-19 impacts on psoriasis through the PsoProtect and PsoProtectMe registries.
 
 

Highlights of World Psoriasis Day

On this year’s World Psoriasis Day, CPN worked with the Canadian Association of Psoriasis Patients and Unmasking Psoriasis, an awareness group in Saskatchewan, to raise awareness about psoriatic disease. We focused on highlighting the effects of COVID-19 on the psoriasis community, including how shortcomings in the current health and social systems were exacerbated by the pandemic. 
 
We also conducted a national survey of people with psoriasis and psoriatic arthritis in Canada, including their experiences during the pandemic, and had over 800 people participate. Check out this infographic for the highlights of our survey findings. 
 
To help us further explore some of the issues that were included in the survey, we held virtual patient discussions with members of the psoriasis community in Canada. Through these discussions, we explored their experiences with psoriasis and psoriatic arthritis prior to the pandemic and how their experiences were affected by the pandemic. 
 
After our survey and virtual patient discussions, we held a series of virtual meetings with the federal government with the goal to:
  • Highlight the experiences and needs of people with psoriasis and psoriatic arthritis, including during the pandemic; 
  • Discuss the role of the federal government in supporting provinces to ensure access to care and effective and sustainable treatments for people with psoriasis and psoriatic arthritis; and 
  • Identifying the role of the federal government in research on skin diseases, including psoriasis.
CPN also launched a successful awareness campaign on social media, engaging dermatologists and clinics across Canada. This year's campaign included a t-shirt designed by Dr. Wei Jing Loo in London, Ontario. We received over 30 images from across Canada of people sporting the awareness t-shirt including from the Winnipeg Clinic, featured in this image.

We want to give a big thank you to our vibrant psoriasis community for taking the survey, sharing your stories with us, and helping build awareness and challenge stigma on World Psoriasis Day and all year long!

Looking Ahead to 2021

This year we sent out a member survey to learn more about our members' needs, priorities, and challenges when it comes to living with psoriasis and psoriatic arthritis. Some of our key findings from this survey were the following:
  • When asked to rate advocacy priorities for 2021, the majority rated the following as “very high” priorities: increasing access to medication treatment options and increasing the affordability of treatments. 
  • Understanding biologics/biosimilars and understanding over-the-counter products were identified as “high” priorities. 
  • Other important themes that emerged were: finding a cure, research, increasing education about psoriasis and psoriatic arthritis, and increasing information on lifestyle and therapies, like diet, stress reduction, and pain management. 
  • Respondents shared that they thought our most important work is advocacy, providing information, and spreading awareness about psoriasis. 
When asked what we could do better, we heard: advocacy and communication.

For these reasons, we’ve added a Policy and Advocacy tab to our website, which we’ll continue to update throughout 2021. We’ll also continue to engage our members and the broader psoriasis community through surveys throughout the year to continue to inform our priorities and government submissions.
 
We’ll also be developing activities and resources to address other identified priorities. There will be many opportunities to be involved so we encourage you to stay tuned for our member e-newsletters and to be in touch if you’d like to participate in planning or sharing your experiences through our programs!
 
Thank you to all our members across Canada who participated in our member survey this year. Your responses help us shape our work for 2021. 

     

Do you live with Psoriatic Arthritis?

If so, please take a few minutes to fill out this survey!

The Canadian Agency for Drugs and Technologies in Health (CADTH) will be conducting a review of a medication (upadacitinib) for psoriatic arthritis.
 
To help the CADTH review committee understand what it's like to live with psoriatic arthritis and what patients expect from a new treatment, CPN is collaborating with other psoriasis and arthritis organizations to provide patient input into this review.
 
To help us inform our submissions, please consider sharing your experiences with psoriatic arthritis through a brief survey. For more information and to fill out the survey visit https://www.surveymonkey.com/r/upadacitinibCPN.

Thank you to our Donors and Sponsors!

Thank you again to all of our members! For ways that you can help CPN advance psoriasis and psoriatic arthritis in Canada, please consider:

Volunteering or sharing your story by emailing your interest to: info@cpn-rcp.com

Following us and sharing on social media: Facebook | Twitter | Instagram | LinkedIn

Making a donation: https://www.canadianpsoriasisnetwork.com/donate/


Thank you to all of our donors! Donors will receive an annual summary from 2020.
 
Thank you to our 2020 corporate sponsors, we couldn’t do this work without your ongoing support!









 



           

From the Community

Patient-initiated Dermatology Research Needs CPN Participants! 

The International Alliance of Dermatology Patient Organizations (also known as GlobalSkin) is inviting CPN's patient community members to participate in a unique research project where the dermatology patient is the expert and their opinion truly matters. 
 
With the help and guidance of dermatology patients around the world, the Global Research on the Impact of Dermatological Diseases (GRIDD) project aims to develop a global instrument to measure the impact of living with skin diseases on a global scale. Further, it will document patient experiences including the extent of disease impact and burden for patients and their families.

Dermatology patients are needed!

The GRIDD project is currently in Phase 3 and focused on a Patient Data Verification Delphi. The goal of the Delphi is to gather impact data from 2000 adult dermatology patients representing as many different dermatological diseases as possible and from all regions of the globe.

As a participant, you would be asked to take part in two surveys – one now and then one in two months.  The survey will ask you questions about your experience living with psoriasis and how it impacts your life and how much of a burden it is on your family.

By taking part in the Delphi and completing the two surveys, you will be making an important contribution to improving the lives of psoriasis patients and all dermatology patients around the world now and in the future.
 

Make YOUR IMPACT – Take the Delphi Survey Now
The survey is live for 6 weeks from December 2020 to mid-January 2021. 

For more information about GRIDD or GlobalSkin please visit – https://globalskin.org

 
Facebook
Twitter
Website
Instagram
LinkedIn
Email
Copyright © 2020 Canadian Psoriasis Network. All rights reserved.

unsubscribe from this list    update subscription preferences 






This email was sent to <<Email Address>>
why did I get this?    unsubscribe from this list    update subscription preferences
Canadian Psoriasis Network · 328 Bartlett Ave · Suite 809 · Toronto, Ontario M6H 3G7 · Canada

Email Marketing Powered by Mailchimp