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. 

Community Events

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.   

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 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:

https://rareadvocates.org/take-action/?vvsrc=%2fcampaigns%2f66800%2frespond

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 at?edrinw@porphyriafoundation.org?to be featured on the APF website and even our quarterly newsletter. 

SHARE YOUR EVENT WITH US

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! 

CALENDAR OF EVENTS:

*Check back for more events!* 

 

Saturday, April 10 

  • WEAR PURPLE or YOUR PORPHYRIA AWARENESS SWAG

 

  • SEND US YOUR PHOTOS! 

 

Sunday, April 11 

  • CEP/ADP member story highlights!  

 

Monday, April 12 

  • #LETSTALKPORPHYRIA
  • Zoom Session with Nicole Castellano! Send us an email to RSVP TODAY! 
  •  
  • PCT member story highlight! 

 

Tuesday, April 13 

  • Shadow Jumper Challenge EPP/XLP story highlight! 

 

Wednesday, April 14 

  • PORPHYRIA LIVE with Dr. Bruce Wang via FB. Will you be joining us?

 

  • AIP member story highlight! 

 

Thursday, April 15 

  • VP member story highlight 

 

Friday, April 16 

  • TAG YOUR MEMBERS OF CONGRESS ON SOCIAL MEDIA ENCOURAGING THEM TO JOIN THE RARE DISEASE CONGRESSIONAL CAUCUS!!
  •  
  • APF Click Campaign hosted by Recordati Rare Diseases

 

Saturday, April 17 

  • WRAP PARTY!  Thank You for Spreading Awareness - Reach out to those who have been supportive to thank them!

MERCHANDISE

New merchandise will be available very soon in the APF Store ?https://porphyriafoundation.org/apf-store.

?(Check back soon for updates)

LOGOS & MATERIALS 

Please use the attached logos for your local events. 

Porphyria Awareness Press Release is 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 & 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)! 

FACEBOOK FRAME  

Change your profile photo and search PORPHYRIA or Click here to add the frame to your photo! 

?

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!

DONATE 

Please support the American Porphyria Foundation during Porphyria Awareness Week! https://porphyriafoundation.org/get-involved/donate.

♦ Donate ♦

CONTACT THE APF FOR ALL YOUR PORPHYRIA AWARENESSS WEEK NEEDS! 

 

866-APF-3635 or info@porphyriafoundation.org  

 

 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. 

 

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!

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Contact Information

 

Is your contact information up to date?

If not please give us a call @ 866-APF-3635 or Email to info@porphyriafoundation.org

 

American Porphyria Foundation| 1.866.APF.3635 | porphyriafoundation.org

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