September 2021
Please join us for this opportunity to learn about the porphyrias and to meet other members of your community!
Caregivers, family and friends are welcome!
This Patient Session will be open to BOTH in-person and virtual attendees.
The Porphyrias Consortium and the American Porphyria Foundation invite you to attend a free patient day meeting on Sunday, October 17, 10am – 3pm (Registration and Coffee at 9:15am). Patients and caregivers are also welcome to register for the entire scientific conference at the Patient/Patient Advocate rate.
Click here to register
Researchers in the Porphyrias Consortium are conducting a focus group study for parents of children with Congenital Erythropoietic Porphyria (CEP) and adults with CEP to better understand the experiences of patients and parents, and the issues they face, and to gather more information about CEP.

We will be conducting the focus groups online over Zoom. Each group will be a discussion led by the researchers and will consist of about four to eight participants. You will only need to participate in one focus group and it is expected to last for about 2 hours.

If you are interested in participating or learning more please email and we will connect you with the researchers!

Contact: [email protected]
The APF is hosting a patient- only virtual networking forum for members with ACUTE HEPATIC PORPHYRIA who are using the treatment Givlaari.
Givlaari Networking Forum zoom gathering will be an opportunity for patients to connect in an informal and comfortable group to discuss the treatment, share experiences and to give and get peer support.

Please share your interest in participating in the conversation - and we will connect with you for the zoom timing and details.

Email: [email protected]
The Heme Biosynthesis and the Porphyrias 2021: Consensus Diagnoses, Variant Disorders, New & Emerging Therapies, is to be held October 15-17, 2021, at the Hyatt Regency Schaumburg, IL near the Chicago O’Hare Airport.

This 2.5-day educational symposium will feature international and national experts who will present the latest findings on the biology, transport, and regulation of heme biosynthesis; as well as the clinical features, management, and current and emerging treatments for acute hepatic and erythropoietic porphyrias.
The month of September is Pain Awareness Month, a time when various organizations work to raise public awareness of issues in the area of pain and pain management. 
Make sure you are following us on all of our channels as, we will be sharing member stories, providing resources, education material and much much more.
Remember.... #PainCounts 
Are you a caregiver? If so, you have a story!
We would love to hear about your caregiving experience - what has helped and what has been really hard. APF invites you to share your story with us so others may find strength and hope in your words. It is a great way to give back to the caregiving community and a powerful way to begin your emotional healing. The only requirement for a story is your honesty, as many find this to be the most cathartic release for both readers and writers.
The APF is looking to organize and host a video gaming night for our younger members to connect and play age and family appropriate games.
Would you be interested? Answer the poll below ! Stay tuned for more details!
Want to game with the APF?
The Porphyria Post is changing!

The Porphyria Post will now be moving to a monthly distribution. Do not worry! You will still receive all the latest information and exciting events!
If you have any questions, lease give us a call
@ 866-APF-3635
or email [email protected]
Get Involved
American Porphyria Foundation| 1.866.APF.3635 |