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Patient Reported Experience Measures: 2022 Highlights!

In 2022, Save Your Skin Foundation ran three major patient surveys in order to collect patient-reported experience measure data (PREMs): 

  • “The Patient Experience: Systemic Treatment of Adult Cutaneous Melanoma” (April/May)
  •  “The Patient Experience: Treatment of Patients with Ocular Melanoma” (April/May)
  • “Patient Survey: Treatment Plan Decision-Making” (September/October)

Long-form reporting of the data for “The Patient Experience: Treatment of Patients with Ocular Melanoma” and “Patient Survey: Treatment Plan Decision-Making” are available on the Save Your Skin website. “Treatment Plan Decision-Making” was available in both English and French, and was developed in partnership with AIM at Melanoma. The following blog highlights some particularly notable outcomes from these surveys; we hope you find something of interest to you!

 

Highlights from “The Patient Experience: Systemic Treatment of Adult Cutaneous Melanoma”
  • When asked if they would consider it reasonable to receive additional treatments should their melanoma recur at a later stage, 78.26% directly indicated that they would be interested in additional treatments (Q12).
  • When asked specifically about their experiences on Pembrolizumab (Keytruda™), 73.68% reported enduring fatigue as a side effect, followed in frequency of votes by skin rashes (36.84%) and cognitive impairment (26.32%) (Q17). 61.11% found these side effects manageable (Q18).
  • 95.45% of participants indicated that the side effects resulting from this therapy were worth it for the benefits of the treatment (Q19).
  • When asked if they would consider receiving drug therapy from a clinical trial, 77.27% responded that they would, should the need arise. Of the 22.73% that responded “not sure,” several added comments indicating that they would consider it, but would need more information (Q22).

 

Highlights from “The Patient Experience: Treatment of Patients with Ocular Melanoma”
  • 63.63% of our ocular melanoma survey participant pool who have not received genetic testing would like to, suggesting that many patients see this as a worthwhile process (Question 11).
  • Unsurprisingly, eye-related side effects are the most common for patients with ocular melanoma. These include loss of vision (64.51% of responses), eye pain (16.12%), cataracts (9.67%), flashes of light in the eyes (12.9%), dry eyes (3.22%), macular edema (3.22%), and retinopathy (3.22%) (Q16).
  • 82.35% of participants have ongoing follow up appointments/testing every 3-6 months (Q20).
  • 79.31% of responses suggested that if their disease were to progress in the future, they would be interested in receiving additional treatments (Q21).
  • 64.71% of survey participants indicated that if they were offered enrolment in a clinical trial, they would take it (Q24).
  • The most frequently cited side effects by participants receiving KIMMTRAK ® (tebentafusp-tebn) for their ocular melanoma were fatigue and skin rashes (both selected by 50% of participants) (Q28).
  • 100% of patients who received KIMMTRAK ® (tebentafusp-tebn) noted that the side effects of this treatment were worth enduring for the survival benefit (Q30)
  • The most frequently cited barrier to accessing KIMMTRAK ® (tebentafusp-tebn) was having to travel to another city, which was both an inconvenience and a financial hardship (Q31).

 

Highlights from “Patient Survey: Treatment Plan Decision-Making” English language survey
  • When asked what was the most important topic to discuss with their healthcare team at the time of diagnosis out of the following options: “care plan,” “prognosis,” “treatment timeline,” “quality of life,” and “financial considerations,” survey participants selected “prognosis” as their primary concern, followed by “treatment timeline” and then “care plan.” That “quality of life” and “financial considerations” are the lowest priorities suggests that patients care about survival above all else (Q7).
  • Questions nine and ten demonstrated that patients are creating a treatment plan with their healthcare team along their ideal timeline, which is either at the time of diagnosis or between their first and third appointments.
  • The majority of survey participants (76.56%) stated that they understood at least “most” of the cancer-related information provided to them (Q12); however, 32.82% expressed dissatisfaction with the amount and quality of the information they received (Q21).
  • When asked what resource they most frequently turn to for cancer-related information (other than their healthcare team), the internet was cited by 82.54% of participants (Q13)
  • Questions 15 and 16 illustrated that 73.44% of participants feel they had an appropriate amount of input in developing their treatment plan. 
  • When asked to prioritise the following factors when developing a care plan: “dosing schedule/logistics,” “long-term survival,” “risk of adverse events/side effects,” “financial concerns,” and “lifestyle and family implications,” patients ranked “long-term survival” as their highest priority (Q17).
  • When asked to indicate the two most significant challenges they experienced during treatment, the need for emotional support (60.94%) and the impact of physiological symptoms (45.31%) had the highest number of votes (Q27).

 

Highlights from “Patient Survey: Treatment Plan Decision-Making” French language survey
  • When asked what was the most important topic to discuss with their healthcare team at the time of diagnosis out of the following options: “care plan,” “prognosis,” “treatment timeline,” “quality of life,” and “financial considerations,” survey participants selected “care plan” as their primary concern, followed by “prognosis” and then “quality of life” (Q7).
  • Like the English language cohort, the French language survey participants received care plans along their ideal timeline of either at the time of diagnosis or between the first and third appointments (Q9, 10).
  • In the French language survey, a greater percentage of participants indicated having more responsibility for the development of their care plans. Only 27.27% felt “appropriately involved,” while 63.63% indicated that they made the decision more independently (Q15).
  • When asked to prioritise the following factors when developing a care plan: “dosing schedule/logistics,” “long-term survival,” “risk of adverse events/side effects,” “financial concerns,” and “lifestyle and family implications,” the French language patients also ranked “long-term survival” as their highest priority (Q17).
  • When asked whether they felt prepared for treatment, participants had polarised responses; 63.64% reported feeling “entirely prepared for treatment,” while 27.27% were “mostly unprepared for treatment” (Q24).
  • When asked to indicate the two most significant challenges they experienced during treatment, the French language survey participants voted most frequently for physiological symptoms (54.55%), followed by emotional support and a lack of information, which were tied for votes (36.36% each). This suggests that the need for emotional support is more satisfied for the French language survey participants (Q27).

 

The data from patient reported experience measures, sampled above, is instrumental to our operations as a patient group. We consider these reports when we are prioritising our initiatives for the new year, preparing our strategic plans for patient support, education, awareness, health policy, and advocacy, and share them with other stakeholders in the cancer space. We hope this information was valuable to you, and that the new year brings you joy, prosperity, and good health.

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2022 Sunscreen Dispenser Pilot

OUR 2022 SUNSCREEN DISPENSER PILOT HAS BEEN LAUNCHED!

Save Your Skin Foundation partnered with medical student siblings Samuel and Karen Farag, and the municipalities of Summerside, PEI, Riverview, NBNew Westminster, BC, and Brooks, AB – as well as BC Cancer – to launch 10 dispensers in early August 2022.

The dispensers are automatic and touchless, and provide free, Health Canada approved SPF 30 sunscreen for anyone who needs it. The sunscreen is zinc oxide based, free from chemical sunscreen filters, common allergens and toxic ingredients including oxybenzone, avobenzone, retinyl palminate, PEG, parfume, and sodium lauryl sulphate. See image below for more details.

Here are the locations of the dispensers as of August, 2022:

New Westminster, BC

  • Moody Outdoor Pool
  • Hume Outdoor Pool
  • Grimston Park Wading Pool
  • City Parks Works Yard to support City staff working in the outdoors

Summerside, PEI

  • Summerside Turf Field
  • Leger Park
  • Summerside Boardwalk
  • One mobile dispenser to be used for festivals and public events

Riverview, NB

  • Behind the gazebo on the Riverfront Trail

Brooks, AB

  • Duke of Sutherland Park and Splash Pad

Applying sunscreen is part of an overall sun-safe way to enjoy the outdoors. First, limit your time in the direct sunlight, especially between 11 a.m. and 3 p.m., seek shade, cover up by wearing long sleeves and pants and a wide-brimmed hat. Use sunscreen, specifically one labelled broad-spectrum, SPF 30, protect the lips with lip sunscreen or zinc oxide. Apply 20 minutes before sun exposure, and reapply every two hours or after swimming.

Affixed to the Dispensers is a list of the sunscreen ingredients and reference to Health Canada’s approval of the sunscreen, as well as a disclaimer with respect to the use of the Dispenser or the sunscreen contained therein:

THE SUNSCREEN IS BEING USED AT YOUR OWN RISK. None of Save Your Skin Foundation, (participating cities), nor anyone else connected to these organizations, makes any assurances, representations, guarantees or warranties with respect to the use or effectiveness of the sunscreen or dispenser, and any and all use of the sunscreen or dispenser is done at your own risk. By using the sunscreen or the dispenser, you acknowledge and agree that none of Save Your Skin Foundation, (participating cities and organizations to be listed) nor anyone else connected to these organizations are responsible for the results or consequences from any use of the sunscreen or dispenser.

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1 Week Until the Federal Election: Make Healthcare a Priority

Take Action Before September 20

Send your local federal candidates a letter using our easy, automated website. You can customize the message to address issues important to you.  Having local candidates hear directly from patients is very powerful.

The COVID-19 pandemic has pushed our healthcare system beyond its breaking point, as the system provided care to the overwhelming number of COVID-19 patients, while endeavouring to maintain care for all other patients.

Advocating for change has never been simpler and will only take you a few seconds.

Regardless of ability to pay, or where they live, Canadians should not be reliant on “the postal code lottery.” All Canadians deserve to have health care placed at the center of the commitments of our future government.

Contact your candidates now to have your voice heard! Automatically send a letter to your local candidates that you can personalize as much or as little as you want.

Click HERE to encourage Government to Make Healthcare a Priority

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World Cancer Day 2020

On February 4th, celebrate the 20th Annual World Cancer Day with us!

This international day focuses on raising awareness of cancer and encouraging its prevention, detection, and treatment.

Each year, hundreds of activities and events take place around the world, gathering communities, organisations and individuals in schools, businesses, hospitals, marketplaces, parks, community halls, places of worship – in the streets and online – acting as a powerful reminder that we all have a role to play in reducing the global impact of cancer. To find an activity in your area, consult the Map of Impact.

This year’s World Cancer Day’s theme,‘I Am and I Will’, is all about personal commitments to act. World Cancer Day believes that through positive actions, we can reach the target of reducing the number of premature deaths from cancer and noncommunicable diseases by one third by 2030.

The World Cancer Day website is jam-packed with useful resources, including a quiz you can take to find out what kind of health leader you are, suggestions of actions you could take based on the time you’re willing to invest, a custom poster making tool, several toolkits to help you spread the word, and much more.

Wold Cancer Day invites you to share your story and to read the story of others around the world. Whether you’re a patient, a survivor, a caregiver, a family member, a healthcare professional, or simply someone who cares, World Cancer Day is an opportunity to raise your voice and to take action to end cancer.

world cancer day

For more information, visit: www.worldcancerday.org.

To learn more about Save Your Skin Foundation initiatives to bring awareness and encourage the prevention, detection, and treatment of skin cancer and melanoma specifically, visit What We’re Working On.

 

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One Week Until Move for Melanoma!

All across Canada teams of runners, bikers, hikers, and even laser tag enthusiasts are all preparing to MOVE FOR MELANOMA next weekend!

In our weekend-long fund-and-awareness-raising activity challenge Save Your Skin supporters will be all hands on deck to make this event great.

Friday September 13 kicks off Move for Melanoma with a team of cyclists biking 600 kilometres in the Montreal area, wrapping up the ride on Monday September 16 in conjunction with two shorter rides, 85 kms and 55 kms, in which our very own Kathy Barnard will be biking with her husband alongside the BMS team.

On the Saturday and Sunday in cities all over, participants will do their favourite activities in the name of melanoma patient support – in addition to the run and bike routes people have planned, we have crossfit teams, kayaking, city tour walking, and axe-throwing!

Haven’t yet registered? 

CLICK HERE to view the event website and join a team, create a team, or donate today!

Click on any image below to see what these teams are doing:

             

             

 

Save Your Skin Foundation notes the unique accessibility of the Challenge as an important part of campaign. “Skin cancer can happen to anyone. It’s caused by exposure to ultraviolet (UV) rays from sunlight or tanning beds. We therefore wanted a campaign that was accessible to anyone”, explains Kathleen Barnard, President and Founder, Save Your Skin Foundation and stage four melanoma survivor. “People have come up with very creative ideas that work within their Challenge comfort zones. One team is doing CrossFit, another is doing an axe-throwing contest and I’ll be cycling 55 kilometres in Montreal on Monday!”

Email us to let us know what you’re doing for MOVE FOR MELANOMA! 

Stay tuned for more photos and excitement from the events next weekend.  We will also post thanks to our generous sponsors, including:

Bristol-Meyers Squibb Canada, Montreal, Quebec

AXED Throwing Club, Thornbury, Ontario

Beach City CrossFit, Penticton, BC

MadLab School of Fitness, Vancouver, BC

And many more!

 

 

 

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PeerVoice – Advances in Adjuvant Melanoma Therapy

We are pleased to announce that the PeerVoice activity entitled ”Advances in Adjuvant Melanoma Therapy: Working Together To Improve Outcomes’’ has now launched online.  SYSF is proud to endorse this work, and applauds the valuable work put into this educational resource.

This initiative features two expert panel discussions, verbally presented by:

Michael Smylie, MBCHB, FRCPC, Edmonton, Alberta

Joël Claveau, MD, FRCPC, Quebec City, Quebec

Carolyn Nessim, MD, MSc, FRCSC, FACS, Ottawa, Ontario

Presentation 1: Adjuvant Melanoma Therapy: Optimizing the Care Pathway

Presentation 2: Adjuvant Melanoma Therapy: Experts Appraise the Evidence

These verbal interview-style presentations are also available as downloadable transcripts, click here to view or read the presentations: PeerVoice: Advances in Adjuvant Melanoma Therapy

PeerVoice activities are designed to fill the unmet needs of the medical community by reporting information pertaining to clinically relevant advances and developments in the science and practice of medicine.  This independent learning activity is supported by Merck Canada Inc.

 

NEW! December 2019:  Minding the Melanoma Patient With Brain Metastases: Updates to Personalize Care

Listen to the recording, and/or download the presentation, by:
Marcus Butler, Medical Oncologist, University of Toronto  |  Princess Margaret Cancer Centre

Raising the Bar With Immunotherapy for Melanoma and Kidney Cancer: Strategies to Enhance Care. This independent learning activity is funded by Bristol-Myers Squibb Canada Co.

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Melanoma Awareness Month – May 2019

May is Melanoma Awareness Month

May is Melanoma Awareness Month and it’s the perfect time of year to review a few easy steps we can all take to Be Sun Safe!

Spread Awareness

Join us in spreading the word about Melanoma Month by using one of our facebook banners as your cover photo! They are available for download HERE:

Sun Safety

Help us share the message about Sun Safety! Download our Sun Safety infographics by clicking on the images below and share with your friends and family!

      

Examine Your Skin

Learn how to perform a monthly skin self-exam!  When caught early, skin cancer is very treatable.

Patient Support

For those living with melanoma, support can be vital to the healing process. Save Your Skin Foundation provides a collection of resources as well as several ways for patients to connect with others or with private support. If you know someone touched by melanoma, please help them to connect with us.

We provide one-on-one support through Founder Kathy Barnard. We also provide support from other patients and survivors through our initiative “I’m Living Proof”

Click HERE for a summary of the ways you can connect with other patients, survivors, and caregivers touched by melanoma and non-melanoma skin cancers, and ocular melanoma.

Press Release

If you’re interested in what Save Your Skin is working on for Melanoma Awareness Month, check out our official press release, which includes vital information about melanoma rates in Canada, prevention and detection, and how to support those battling skin cancer.

Public Service Announcement

Click here to watch our new video cut about sun safety and skin cancer awareness:

 

 

Stay tuned for more updates throughout May – Melanoma Awareness Month!

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SYSF Collaborates with National Comprehensive Cancer Network

The National Comprehensive Cancer Network® (NCCN®) is a not-for-profit alliance of 28 leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, efficient, and accessible cancer care so patients can live better lives. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers around the world.

Though these guidelines are developed with best practices in use in the United States, the resources do apply to patients and clinicians in Canada (where treatment options and accessibility apply), as confirmed with members of the Save Your Skin Foundation Medical Advisory Board.  Canadian doctors do refer to the NCCN clinical guidelines, and they do support the distribution of NCCN patient guidelines to Canadian patients.

There are guidelines created for many cancers; we have listed below the links to each most relevant to the topic of skin cancer or ocular melanoma, as well as supportive topics such as immunotherapy or treatment side effects, and mental wellness issues and survivorship. NCCN guidelines are easy to read, well illustrated, and a valuable resource for patients, available as online e-booklets, download-able PDF files, or on the “NCCN Guides for Cancer” app for iPhone or Android devices and tablets.

Today marks an exciting day for non-melanoma skin cancer patients, with the release of the new booklet, NCCN Guidelines for Patients®: Squamous Cell Skin Cancer, endorsed by Save Your Skin Foundation, and made possible by funding through the NCCN Foundation®. This new book of patient information explains prevention, diagnosis and treatment for squamous cell skin cancer—the second-most common skin cancer (after basal cell cancer). Squamous cell and basal cell skin cancers are responsible for about 5 million annual incidents of non-melanoma skin cancer in the United States1—making them more prevalent than all other types of cancer combined2. Incidence rates have been rising for squamous cell skin cancer in recent years, particularly in younger people3. (source)

This new booklet explains in detail the diagnosis of squamous cell skin cancer, treatment and procedure options, but it also provides personal accounts from patients who have experienced the SCC journey, as well as treating centres and patient resources such as a list of questions to ask at doctor appointments. Save Your Skin Foundation is pleased to support these new guidelines document, and to help connect patients with the resource, as well as to connect NCCN with patients who so generously shared their perspectives with us for the development of the booklet.

SYSF has every confidence that the new NCCN Guidelines for Squamous Cell Carcinoma will help patients understand and manage their skin cancer diagnosis, treatment, and recommended follow-up routine.  This comprehensive resource gives skin cancer patients a reliable checklist to inform decisions in their care, which is much-needed for this common form of cancer, and even more helpful in the metastatic setting.

We look forward to continued collaboration with NCCN, and will offer our support with any new skin cancer guidelines or updates to existing booklets.

To view the guidelines, please click the links below:

NCCN Guidelines for Patients®: Squamous Cell Skin Cancer

NCCN Guidelines for Patients®: Melanoma

NCCN Clinical Practice Guidelines®: Uveal Melanoma

NCCN Guidelines for Patients®: Distress

NCCN Guidelines for Patients®: Adolescents and Young Adults with Cancer

New! NCCN Guidelines for Patients Explain How to Recognize and Manage Immunotherapy-Related Toxicities, July 2020:

Click here to view the new NCCN Guidelines for Patients®: Immunotherapy Side Effects series

 

Virtual Library of NCCN Guidelines® AppAvailable for iPhone/iPad and Android Smartphone/Tablet

 

February 28, 2019 press release detailing news of the NCCN Guidelines for Patients® ~  Squamous Cell Skin Cancer: New Patient Resource from NCCN Clears up Confusion around Highly Common Type of Skin Cancer

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SYSF Teams up with La Roche-Posay Canada at OneWalk Toronto 2018

Last weekend I went for a 15 kilometre walk— as in, 15 kilometres all at once. Two short years ago I could not have done that, being in recovery from surgeries and treatment for advanced melanoma, I was not physically or psychologically capable of such a feat. This year however, I was grateful to walk 15 kilometres (in 3.25 hours!) alongside a team dedicated to raising funds for melanoma research at Princess Margaret Cancer Centre in Toronto.

I was motivated to join this team this past spring, when our new sponsor La Roche-Posay Canada told me they were doing the OneWalk Toronto 2018, and suggested perhaps I could join them as a representative of melanoma survivors and Save Your Skin Foundation (SYSF).  I was thrilled but also anxious about this idea – could I really do it?

We each had a fund-raising goal and friendly instructions to meet at Nathan Phillips Square in downtown Toronto on Saturday September 8, 2018 at 7:30am. Being as I was a guest on the team I didn’t have to do any of the heavy lifting, but I was there early enough to witness the hard-working team at La Roche-Posay (LRP) setting up, distributing sunscreen samples, and greeting walkers with encouraging smiles and high-fives.

I was thrilled to meet some of the folks I had been speaking or emailing with for months – it was so great to put faces with names. I had done events with LRP in the past, but this was a large local project in which SYSF and I both feel quite invested.

La Roche-Posay, with their sunscreen line, is a huge proponent of melanoma prevention, and the partnership we were demonstrating at the OneWalk was that of awareness and education. LRP is also a sponsor of the OneWalk Toronto event and were obviously enthusiastic about being able to bring awareness to sun safety and skin cancer prevention to all participants. They had a shade tent and sunscreen samples and tester bar, as well as their new “My UV Patch.”

My initiation into the team that morning was the presentation of my name tag and lanyard for the walk. I did not expect the rush of emotion when my new friend put my lanyard on me – it was a special coloured one, reserved for the cancer survivors of the crowd.

Not having participated in the OneWalk before, I was unexpectedly dazzled by the supportive community and encouragement to cancer patients and survivors at the event. Everyone everywhere was respectful of and very loving to those of us with the rainbow lanyards.

At one point during the opening ceremonies, the MC asked everyone with a rainbow lanyard to remain standing, and everyone else to kneel on one knee. Our team happened to be at the front near the stage, so when this happened I was glad I had my back to most of the hundreds of people in the square all around me – my tears were flowing at this point – I was so overwhelmed I almost got down on one knee too. I was incredibly humbled by the honour I felt by this moment of silence in cancer survivors’ memory and support.

Team LRP raised over $20 000 for Princess Margaret Cancer Centre, a decent portion of the total raised $4.7 million by 3200 walkers from all over Canada. I could clearly see why the event is so successful; it is very well organized, and cancer patient care is the obvious topic at hand. Princess Margaret Cancer Centre staff and supporters made speeches in the opening ceremonies, and a couple of the Research Team Leads also got up on stage to address the crowd. Overall, it was a fabulous representation of this centre, which happens to be one of the top five in the world for cancer care research and innovation.

Even one of our Medical Oncologist friends and SYSF Medical Advisory Board members from PMH was present – he had done the Friday evening NightWalk – but he came after lunch Saturday to meet with the La Roche-Posay team. I am thrilled to report I got a hug from him; I couldn’t stop more tears when he thanked me for participating in the event. It’s not very often I get to thank him in person for all that the HE does for melanoma patients like me.

I’d like to extend huge thanks to my new friends from Team La Roche-Posay Canada, not only for their warm welcome and hard work at OneWalk Toronto 2018, but also for their dedication to skin cancer prevention and awareness all year-round. I look forward to helping facilitate the initiatives Save Your Skin Foundation and La Roche-Posay will be working on together – stay tuned for updates!

Team LRP with Toronto Mayor John Tory

Team LRP at the Finish!

 

By Natalie Richardson,

Metastatic melanoma survivor and advocate, Managing Director, Save Your Skin Foundation

 

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Take the All.Can Patient Survey in Canada

Can you help to shape the future of cancer care? Check out this patient survey launched in Canada.

In healthcare, inefficiency is often caused by neglecting to focus on what matters most to patients. A new international patient survey is gathering insights on inefficiencies in cancer care and is asking Canadian cancer patients (and their carers) to share their thoughts and experiences on where inefficiencies occur, and how cancer care could be improved. Findings will be revealed later this year and used to inform policy discussions on improving cancer care for all.

The survey is being administered by All.Can (www.all-can.org), an international multi-stakeholder policy initiative focused on improving efficiency in cancer care. Please share your thoughts, to ensure the patient voice can be at the heart of cancer care. #PatientsAllCan

For more information and to complete the survey for Canada or other countries, visit: http://patientsurvey.all-can.org

As a member of All.Can International, Save Your Skin Foundation has been working closely with the administrators of this survey, and is here to support you.  If you would like further information or need help with the survey or subsequent reporting of survey responses, please contact us at info@saveyourskin.ca

Thank you!

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