About
Canadian Association for Porphyria / Association Canadian de Porphyrie supports Canadians living with porphyria.
Impact Fund Project
For this project, we hired someone to help us create a communications plan and awareness materials to go with a new website. Based on the needs and experiences of our members, we created a communications plan, templates and a content calendar for social media to help us spread the word about porphyria. We were also able to start collecting patient stories and develop educational content that can be shared on our different platforms. We were also able to apply for (and receive) Google AdGrants for free.
We know that a lack of accurate, easy-to-understand and reliable information about porphyria makes it hard to get a timely diagnosis and treatment. The challenges of porphyria aren’t just about the physical symptoms. Having porphyria is isolating: you may not know anyone else with your condition and avoiding sunlight can make it difficult to participate in everyday activities. The Member Impact Fund gave us the resources to make a plan and create materials that will help share the realities and raise awareness of the needs of people with porphyria with patients, their support networks, and health care professionals.
The Biggest Success of the Project in Our Patient Community
As an organization run almost entirely by volunteers on a small budget, this project was really important to us to build more awareness and help Canadians with porphyria connect more with us and with each other. Having templates and a framework for how to move forward will be so helpful as we grow as an organization and will give us a consistent and clear message for our outreach and awareness initiatives.
“Looking at this content, it feels like it was created by someone who understands what it is like to have porphyria. It will make such a huge difference for new patients. I wish I'd had something like this when my daughter was diagnosed. It took me a long time to figure out what I should do and what I needed to know.” -CAP Volunteer
To learn more about this organization, please visit:
Website: hwww.canadianassociationforporphyria.ca
Facebook: @porphyriacanada
Instagram: @porphyriacanada
