Porphyria Awareness Week 2020

Paw 2020

Porphyria Awareness week is an opportunity for you to
create awareness in your community!

The 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.


#ASKMEABOUTPORPHYRIA is a new campaign focused on starting the conversation about porphyria. This campaign encourages you to educate your local community and healthcare professionals about Porphyria. One conversation makes all the difference.

How will you get the conversation 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. 

LEGISLATIVE EFFORTS 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. If you would like us to send this letter on behalf of you, please contact Edrin Williams, Director of Patient Services via email at edrinw@porphyriafoundation.org

COMMUNITY EVENTS Across the US, and even the globe, patients are planning community events.  A Fun Run in Florida, delivering Patient and Physician Education Materials, reaching out to local media, influencing members of congress, hosting events at local hospitals and clinics, attending the FB Live Event with Dr. Bruce Wang, …. what will you do?

WEAR PURPLE DAY!  Did you know that Porphyria is named from the ancient Greek word porphura, meaning purple? On Friday, April 24, 2020, we encourage you to support Porphyria Awareness Week by wearing PURPLE! Share your photos with us by tagging us on social media or emailing them to Edrin Williams, Director of Patient Services via email at edrinw@porphyriafoundation.org 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 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!

Submit your photos and events to Edrin Williams, Director of Patient Services to be featured on the APF website. We are excited to show the impact of everyone’s efforts across the U.S.!


New merchandise will be available very soon in the APF Store - https://porphyriafoundation.org/apf-store. (Check back soon for updates)

Logos and Materials

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.
Printable Porphyria Awareness Poster is included here.
Porphyrias at a Glance is included here.

APF awareness flyer

APF awareness flyer

APF awareness flyer

Facebook and Social Media

Open this link to join our Facebook groups: https://www.facebook.com/AmericanPorphyriaFoundation/

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 18th! 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)!

Paw 2020

Media Kit

For everything you need to know about the American Porphyria Foundation all in one place, check out our media kit here. Within this file you will find information about the APF, the Porphyrias, board members, the latest news and more. Click here for the 2020 Media Kit.


We are grateful for all donations during Porphyria Awareness Week! https://porphyriafoundation.org/get-involved/donate

866-APF-3635 or porphyrus@porphyriafoundation.com