Message from CAP’s President, Michelle Capon
Happy 2025! As we prepare for Rare Disease Day (Feb 28) I'm excited to announce some key initiatives we will be launching to promote porphyria awareness in the coming months. I am excited to announce:
In the next few weeks we will be launching a physician training deck geared towards training HCP's regarding the care and treatment of Acute Porphyria patients as well as helping them understand the disease more thoroughly.
We have created emergency treatment cards that will be available to all Acute and skin based porphyrias to help in the treatment of their condition if they have to share details of their disease with a professional, at the emergency room etc. If you are interested in having an emergency treatment card sent to you please email coordinator@porphyriacanada.ca and we will send you one in the mail. This will also be available on our website shortly.
I'm ecstatic to announce that we will be offering five one time grants to HCP's to aid in the promotion of education in the area of porphyria. One of our biggest challenges here in Canada is that we have a lack of physician training and a lack of physicians who are knowledgeable in treating Porphyria as a rare disease. CAP's hope is that these one time grants in the value of $2,500 will help in providing support to an HCP who is interested in learning more about Porphyria as a condition and how to treat it. If you are interested in receiving a grant to learn more about Porphyria, please send a letter of intent and the reason you are requesting the grant, along with a description of the initiative you are undertaking to educate yourself or to help support patients in Canada to coordinator@porphyriacanada.ca.
Last but not least I want to congratulate our partners Shadow Jumpers on their Spin Away the Sun campaign where they were able to raise $116,000 for photosensitive families. You smashed it!!!!
Keep safe, keep warm and watch out for our next newsletter coming soon.