Porphyria Awareness week is an opportunity for you to create awareness in your community!
#LETSTALKPORPHYRIA?is a new campaign focused on starting the conversation about Porphyria. This campaign encourages our community members to educate and partake in a dialogue with their peers and healthcare professionals about Porphyria.
How will you get the discussion started? Get creative and let us know how you will get involved. We hope that this campaign empowers you to raise porphyria awareness within your communities
Across the US, and even the globe, patients are planning community events: Organizing a Virtual Fun Run/ Walk, delivering Patient and Physician Education Materials, reaching out to local media, influencing members of congress, hosting virtual events in the community to educate them about porphyria, attending the FB Live Event with Dr. Bruce Wang, …. what will you do? Whatever you do, please stay safe and adhere to all social distancing guidelines and COVID-19 protocols.
Influence your members of congress by asking them to join the Rare Disease Congressional Caucus in support of the American Porphyria Foundation. You can find the letter attached here. This letter will be sent to members of Congress on behalf of all patients and families affected with Porphyria. You can also click here to send an email directly to your member of congress and their staff. Click on the link:
Did you know that Porphyria is named from the ancient Greek word porphura, meaning purple? On?Saturday, April 10, 2021, we encourage you to support Porphyria Awareness Week by wearing PURPLE! Share your photos with us by tagging us on social media and using the hashtag #LetsTalkPorphyria or emailing them to Edrin Williams, Director of Patient Services at email@example.com to be featured on the APF website and even our quarterly newsletter.
Events take place across the globe in recognition of Porphyria Awareness Week. We are excited to show the impact of everyone’s efforts across the U.S. your photos and events to Edrin Williams, Director of Patient Services, to be featured on the Porphyria Awareness Week APF website. We encourage you by participating in this week’s activities or even hosting your own event. What will you do to get involved? Tell us - we want to know!
*Check back for more events!*
Saturday, April 10
Sunday, April 11
Monday, April 12
Tuesday, April 13
Wednesday, April 14
Thursday, April 15
Friday, April 16
Saturday, April 17
Please use the attached logos for your local events.
Porphyria Awareness Press Release is included here.
Digital and print logos are included here.
Awareness Week Social Media images included here.
Printable informational flyer is included here.
Porphyrias at a Glance is included here.
The APF will be sharing Member Stories, Medical Moments, trivia and more each day in our open and closed Facebook groups. Make sure to join before April 10th! You can even change your photo with a new Facebook frame. You can also set up a fundraiser on your personal page supporting the APF. Also make sure to follow us on Twitter (@Porphyria_Help) and Instagram (@americanporphyriafoundation)!
Change your profile photo and search PAW2021 to add the frame to your photo!
Please support the American Porphyria Foundation during Porphyria Awareness Week! https://porphyriafoundation.org/get-involved/donate.
866-APF-3635 or firstname.lastname@example.org
American Porphyria Foundation is here to support you with ideas, brochures, materials, social media files – and any support that you may need to raise awareness about Porphyria in your community, to the general public or to physicians. We will be adding to this page over the next few weeks – so come back often to check for additional information.
Although we have a list of events for Porphyria Awareness Week, we encourage you all to participate within your own communities! Please share your ideas with us - we are here to support you in your efforts!