SJS Canada is a non-profit organization dedicated to spreading awareness about the extremely rare life-threatening medical illness.
Impact Fund Project
We needed more marketing and communication resources about SJS/TEN, because there is a lack within the general and medical community. We wanted to make sure we have more readily available and updated information than we already had. The fund enabled us to develop resources, with simplified information, that is ready for use in our patient information packages, conferences, health fair booths, and workplaces for awareness campaigns. We needed resources in physical locations such as doctor’s offices, walk-in clinics, community centers, and awareness presentations where they are easily accessed.
We also wanted more engaging content for our social media followers.
The fund has helped us to amplify the mandates of our organization.
SJS/TEN affects up to 7 people per million globally and cases are spread all over the world.
As an organization, we need to reach, empower and support survivors. Our limited resources made it challenging, but the Impact Fund created the possibility.
We needed to provide up-to-date information on demand and put important resources into the hands of those seeking information, that is easily understood by both SJS/TEN and the general community.
The Biggest Success of the Project in Our Patient Community
The fund enabled us increased engagement with the broader community. Our social media followers were not only liking but were engaging and commenting, even having conversations within the post, and sharing the material.
The information was well received by our SJS/TEN Support group. Survivors commented that we have filled in a gap for them because they now have access to new and relevant information they could relate to and that the materials resonated with them.
Facilitators from the support group who had minimal reference points about SJS/TEN, found the materials easy to follow and had a better understanding of the illness.
The GlobalSkin Patient Impact Project was a humbling experience learning the impact of the illness on survivors’ lives.
"Most of the information we prepared was new to me, and I was delighted to be a part of the team. I was motivated to learn more about the illness and do more for the patient community. Education through awareness is the key. This project will help to decrease the mystery surrounding SJS/TEN and more people will become aware of the illness.
Awareness of SJS/TEN is reaching many who need it most. Together we stand in the fight against SJS/TEN." - Lindel, Brantford, Ontario
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