Stay Up-to-Date with the APF

  • Friday, March 19, 2021

The APF website and social media sources are updated regularly with information related to porphyria. The The APF is dedicated to continue our mission of support to those with porphyria and their families.

Our staff is available via:
Phone: 1-866-APF-3635
Email: info@porphyriafoundation.org


The American Porphyria Foundation Website
Simply the best source out there for expert information on porphyria. The APF website is a tremendous resource containing detailed explanations of the porphyrias, safe and unsafe drug listings, informational materials for patients and medical professionals, blogs, news updates, merchandise and much more!

Click to Go to the APF Web Page


The APF Facebook Pages
The APF Facebook pages are designed for patients to connect with the porphyria community. With groups designated for porphyria types, research information, international community, in addition to our main shared group, members can exchange information that is unique to them. The Facebook site also contains the latest porphyria news and updates affecting our community.

Public Group
Porphyria - American Porphyria Foundation
Please Click Here for Link

Private Groups
APF: Porphyria - AIP, HCP, VP
Please Click Here For Link

APF: Porphyria - PCT
Please Click Here for Link

APF: Porphyria - EPP
Please Click Here for Link

APF: Porphria - CEP
Please Click Here for Link

Porphyria International Support & Education Group
Please Click Here for Link

Porphyria Research
Please Click Here for Link


APF on YouTube
It's not just for teens! The APF YouTube channel hosts many informative videos including, patient stories and industry updates.
Click to See APF's YouTube Page


APF on Twitter - @Porphyria_Help
Need a quick way to catch up on porphyria news? Check out the APF Twitter page. Twitter is a great way to quickly see events and to share thoughts with others in the APF community.
Click Here to Join Twitter


PF on Instagram - @americanporphyriafoundation
Instagram is another quick and easy resource for catching up on porphyria news and sharing thoughts with the community. You can even access Instagram through your Facebook account.
Click Here to Join Instagram


The APF Weekly E-News
If you are reading this you are already aware that our E-news – the Porphyria Post – is a great resource.  Spread the word and let others in the porphyria community know that the very latest developments - including news on clinical trials and Porphyria Awareness Week - are sent through the APF E-Newsletter.