Porphyria Awareness Week 2024

  • Saturday, April 13, 2024

ACTIVITIES FOR NATIONAL PORPHYRIA AWARENESS WEEK (NPAW)

April 13-20, 2024

NPAW is the time for you to reach out to your healthcare professionals to share educational materials and to the local media in your community to share your experience. Please contact imani@porphyriafoundation.org, and she can email you porphyria materials to hand out. Plus, we have NPAW activities for you to enjoy.

The Recordati Click Campaign will transpire all week.   

The APF has partnered with Recordati Rare Diseases to raise awareness of #Porphyria.

From April 13-20, be sure to CLICK THIS LINK ?? https://porphyriafoundation.org/, and @RecordatiRareUS will donate $5 (up to $5k) on your behalf to the American Porphyria Foundation. Spread awareness and help the APF attain a $5000 donation from Recordati. Thank you!

Satisfy the Soul Sunday  

Reflect on your life and your blessings along the way! 

Motivational Monday   

Share your tips to help you cope with your illness and share the Two of Me documentary: https://www.porphyria.com/patient-stories/documentary 

Talk Tuesday - APF podcast RARELY DISCUSSED premiers tomorrow!

Today, see the preview on Facebook and Instagram for an idea of what's to come!

The first episode of the AFP's Rarely Discussed Podcast, the FIRST EVER Porphyria podcast, drops at 10:00 am tomorrow, 4/17/2024, with our hosts Andrew McManamon, APF Advisory Board Member, and Nicole Castellano, APF Director!

Click here to view or listen to the podcast: https://beacons.ai/rarelydiscussed. We can’t wait to open the discussion and give the Porphyria and rare disease community a safe place to connect, learn, and heal. Get ready for meaningful interviews with porphyria and rare disease experts and families impacted by porphyria and rare diseases! Please leave comments for topics you would like to hear about, and be sure to subscribe so you don't miss out on future episodes ??

Wear A Hat Wednesday 

HAT DAY FOR EPP KIDS - Please ask your school to allow all kids to wear hats to school on HAT DAY to support their EPP friends.  Also, ask the teachers to allow the EPP kids to share!

Tell Your Story Thursday    

Today, we share our stories on social media. Feel like sharing your journey or anything about living with Porphyria? Or is it too hard to share? Everyone is different and there's no pressure to share. Those who do not want to share - that also speaks volumes of what you've been through. You may want to share someone else story posted or jump in the comments to say your porphyria is too hard to discuss.

This is our day to really talk about what porphyria means to us. We also ask patients to speak with their local media to feature their stories and share educational materials with doctors and local healthcare care professionals. Check Facebook and Instagram for examples! Here are some stories on our website you can share as well: https://porphyriafoundation.org/for-patients/media-coverage/porphyria-television-and-other-media/

Film Friday /Friends Friday

EPP patient and APF Member shares his story premiering today. Out of the Darkness, Into the Light Chris's Story, Part 1 created especially for the APF for Porphyria Awareness Week 2024. You will see this short film posted on Facebook and Instagram, and you can also watch it here: https://youtu.be/q4VASFZWEbA?si=nbtKDzLltRNqriEb

Friends Friday - PORPHYRIA PARTNERS is a program the APF initiated during Covid to counteract the loneliness and isolation wrought by the disease. It worked so well that we decided to bring it back last year, and those who have joined have said they feel supported in a different way than a big group. If you need a partner or would like to be a partner, email general@porphyriafoundation.org or call 866-APF-3635 for more information!

Show Your Color Purple Saturday   

Wear your purple clothes, hats, socks, glasses, and even purple hair!  Since porphyrus means purple in Greek, purple has been used as the color of porphyria for a century. Color your world purple and post with #porphyria #porphyriaawareness #thinkporphyria