Activities Set to Mark Porphyria Awareness Week April 10–17

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by Mary Chapman |

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Porphyria Awareness Week
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Activities are afoot to mark Porphyria Awareness Week — taking place April 10–17 this year — set aside annually to call attention to this group of inherited disorders that affect an estimated 1 in 500 to 1 in 50,000 individuals globally.

Supporters are encouraged to engage in Zoom sessions and educational events, participate in advocacy efforts, and flood social media — all to raise awareness of porphyria among the public and to draw the attention of lawmakers, scientists, and other stakeholders.

For this year, the American Porphyria Foundation (APF) has a new initiative called #LETSTALKPORPHYRIA to spark community discussions about the disease.

“This campaign encourages our community members to educate and partake in a dialogue with peers and healthcare professionals about porphyria,” the organization states on its Awareness Week events webpage.

The APF has events and activities planned for each day of the week. For the first day, the organization is asking supporters to wear something purple — the term porphyria is derived from the Greek word porphyrus, which means purple — or their “porphyria awareness swag,” take a photo, and send it to the foundation for a chance to be featured on its website or newsletter.

For April 11, the organization is highlighting stories from those who have congenital erythropoietic porphyria and ALAD porphyria. The narratives are posted on the APF website and help readers understand what life is like for those with these rare forms of the disease.

“We hope that these stories will help connect newly diagnosed patients, contribute to general awareness of porphyria, and help more people to be diagnosed promptly and accurately,” the APF states.

On the third day, APF will host and moderate a Zoom session focused on its new initiative #LETSTALKPORPHYRIA. The event will also feature a patient who has porphyria cutanea tarda.

For April 13, the organization will feature on its website a story from an APF member who has erythropoietic protoporphyria. The following day, the APF will host a Facebook Live event with Bruce Wang, MD, an assistant professor of medicine at the University of California San Francisco. In addition, a person with acute intermittent porphyria will be spotlighted.

The story of a patient who has variegate porphyria will be featured by the organization on day six.

For April 16, supporters will be asked to encourage their members of congress to join the Rare Disease Congressional Caucus on behalf of the porphyria community. Go here to have an automatically generated letter sent to lawmakers.

The final day of the week will feature a virtual wrap party. The APF will join the celebration by posting photos sent by participants. Go here for downloadable APF logos and other materials, including social media images, press releases, and informational flyers.

Activities are scheduled globally as well. The British Porphyria Association, for example, has planned events throughout the week, including live interactive Zoom sessions dedicated to different types of porphyria and a session for children. Several fundraising events, including a “wear purple” day and a “purple food” day, are also part of the agenda.