March 10, 2021
New Patient Education Meetings for 2021
Wednesday, April 14, 2021 at 7:00 PM eastern 
Facebook Live with Dr. Bruce Wang, University of California San Francisco - During Porphyria Awareness Week!

Saturday, March 13, 2021 at 4:00 PM eastern
CEP Parent Meeting

Upcoming Patient Education Sessions:
Wednesday, April 28, 2021 at 3:00 PM eastern
Understanding your Genetic Testing Results

Tuesday, June 8, 2021 at 7:00 PM eastern 
Virtual Patient Education Meeting with Dr. Brendan McGuire, University of Alabama, Birmingham
Are you interested in joining these educational sessions?
Yes
No
APF Member Featured in Art Exhibit
APF Shadow Jumper 2019 winner and EPP member, Morgan McKillop has earned the very special honor of being one of the latest portrait representatives in the Beyond the Diagnosis art exhibit. Morgan's beautiful portrait, a powerful symbolism of life in the shadows, will join over 100 other rare disease portraits in the exhibit - to be seen by thousands globally!
Beyond the Diagnosis art exhibit’s focus is on the orphan diseases patient community. Thanks to artists donating their skills, the exhibit reaching the goal is to put "a face to all 7,000 orphan diseases." The exhibit travels to medical schools, research institutes and hospitals globally enticing the medical community to look “beyond the diagnosis to the patient."

Porphyria Awareness Week 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

Saturday, April 17 
  • WRAP PARTY!  Thank You for Spreading Awareness - Reach out to those who have been supportive to thank them!
Merchandise
Be sure to get your gear for Porphyria Awareness Week! Merchandise will be available very soon in the APF Store: https://porphyriafoundation.org/apf-store
Look What You Did!
Thanks to our supporters the APF has recently earned over $500 from amazonsmile! If you are not participating in the program, please consider saving the link below in your browser to use when shopping on Amazon.

You shop. Amazon gives.
  • Amazon donates 0.5% of the price of your eligible amazonsmile purchases to the charitable organization of your choice.
  • amazonsmile is the same Amazon you know. Same products, same prices, same service. It's simple and easy!


Attention Shadow Jumpers
Find Your Shadow 2021 is Here!

We are looking for kids under the age of 18 who are attempting to do something they have always wanted to try but may have been holding off attempting because of their EPP. Whether that is attempting recess, an outdoor sport/camp, a specific family vacation and more, nothing is off limits.

We ask EPP families to submit their story and tell us how we can help make your dealings with EPP easier. Go to SHADOW JUMPERS on the APF website for more details. 

Applications are open now until Friday April 30, 2021 and recipients will be announced during the month of May!   

New Member Stories Needed!
We want to invite you to share your story with the porphyria community. Stories submitted should be about 500 – 2000 words and full of your personality. Make sure to include information about your specific porphyria type, your diagnostic journey and how this disease has impacted your life. Please also attach a recent photo. Send your stories to Edrin at edrinw@porphyriafoundation.org along with with a recent photo and the attached APF Waiver.

*If you already have a story listed on the APF Website and would like to edit it or submit a new photo, please share the updates with Edrin. 

APF's COVID-19 VACCINE STATEMENT

Generally, there is no evidence that any vaccines cause particular problems in people with porphyrias. As a general rule, we therefore recommend that patients with any type porphyria receive vaccinations, in accordance with established guidelines, and under the care and follow-up of their personal physicians.

It is the unanimous opinion of the expert physicians of the Porphryias Consortium that it is important for all porphyria patients to receive the COVID-19 vaccinations , unless their personal physicians have indicated that, in their particular medical situations, not including porphyria, vaccination is not recommended.
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
Get Involved * Stay Safe
American Porphyria Foundation| 1.866.APF.3635 | www.porphyriafoundation.org
"Remember....Research is the Key to Your Cure!"