Porphyria Awareness Week 2021

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. 

Porphyria Awareness Highlights
Thank you for a successful
Porphyria Awareness Week 2021

1. Our very own Dr. Angelika Erwin and patient member Nicole Castellano were featured on a Behind the Mystery segment this morning on the Lifetime channel. Click here to watch!
2. Our Porphyria Nurse Advocate group, featuring Chanan Stauffer (MSSM) made a video that will be used on nursing forums to spread awareness about all porphyrias. Click here to watch!
3. The Global Porphyrias Advocacy Coalition (GPAC) made a video from patient advocacy group leaders around the world to highlight the need for porphyria awareness. Click here to watch!
4. Hattie and Clinton share their experience living with EPP. Click here to watch.
5. Mayra Martinez shared her experience living with Acute Intermittent Porphyria. Click here to watch!
6. Dozens of Patient and Physicians Education Packets mailed.
7. Hundreds of Brochures mailed for distribution.
8. Successful Click Campaign sponsored by Recordati Rare Diseases!
9. Successful Facebook Live Session with Dr. Wang. You can watch Facebook.
10. Influenced your members of Congress to join the Rare Disease Congressional Caucus.
11. TONS of Donations!
12. Wearing your purple attire and purchasing APF PAW Merchandise!
13. Joined APF Member Nicole Castelanno for a PAW Kick-off talking all things Porphyria.
14. Awareness Ribbons crafted by Amanda Boston and sent to APF.
15. Shadow Jumpers Challenge stories.
16. Successful Click Campaign - Thank you, Recordati!
17. Soo much more...

Community Events

COMMUNITY EVENTS  Across the US, and even the globe, patients are planning community events.  A Virtual Fun Run/ Walk, delivering Patient and Physician Education Materials, reaching out to local media, influencing members of congress, hosting virtual events with your community educating 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. *

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. This letter will be sent to members of Congress on behalf of all patients and familied affected with Porphyria. You can also click here to send an email directly to your member of congress and their staff.

WEAR PURPLE DAY / WEAR YOUR PORPHYRIA SWAG!  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 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.

2021 CALENDAR OF EVENTS:

Merchandise

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.
Porphyrias at a Glance is included here.

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 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!