Porphyria Awareness Day

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Global Porphyria Day is Saturday, May 18th. Help us to continue to build awareness and bring attention to porphyria.

HERE'S HOW YOU CAN PARTICIPATE

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TURN PURPLE FOR PORPHYRIA

Join our porphyria friends from around the world to raise porphyria awareness by turning the world #PurpleforPorphyria on May 18th!

Get your purple awareness ribbon for a minimum donation of $5.
Wear purple and encourage your friends to wear purple too!
Light or decorate your home in purple
Share your purple on social media with the hashtag #PurpleforPorphyria

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SHARE YOUR #MYPORPHYRIA STORY

Porphyria is so much more than a list of symptoms. Help others understand what it's really like.

Fill out and share your #MyPorphyria experience. Don't forget to tag @UnitedPorphyrias- we'll be sharing your stories!

Learn more about how your can participate in this campaign from the #MyPorphyria Campaign toolkit!

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YouTube

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WATCH & SHARE #MY PORPHYRIA CAMPAIGN VIDEOS AND STORIES

In the week leading up to Global Porphyria Day on May 18, patients from across the world will be featured in a series of videos, where patients talk about their experiences in the #MyPorphyria campaign.

Introduction to #MyPorphyria

"Everything looks normal": EPP & XLP are #MyPorphyria

"Sometimes my body would shake from pain": HCP & VP are #MyPorphyria

"I reached the worst of the worst": AIP is #MyPorphyria

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SPECIAL FACEBOOK LIVE, MAY 11th- RECORDING AVAILABLE

Kicking off the lead up to Global Porphyria Day, we'll be hosting a special Facebook Live event with Dr. Amy Dickey. Get your porphyria questions answered by an expert! Join the Porphyria Together Facebook group to watch the recording!

Donate now

Supported my Mitsubishi Tanabe.

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