Porphyria Awareness Week is One Week Away!



Porphyria Awareness Week is ONE WEEK AWAY!

We strive to dedicate this week to promote this rare disease, reduce the stigma associated with porphyria through physician education, and provide support for those affected.


What are you planning?? It does not need to be elaborate. If each of us tells one person and they tell one person...we have created awareness about this disease that affects us every single day. Need words? Brochures, A PowerPoint? A porphyria fact sheet? We’ve got them for you along with many other resources. Check out www.porphyriafoundation.org/get-involved. Together we are stronger!

Contact the APF office today for additional information!

1.866.APF.3635 or email: edrinw@porphyriafoundation.org



Do you have your merchandise for

Porphyria Awareness Week?

Our hope is that you all will buy and wear APF merchandise to help promote and raise awareness about Porphyria. Please note that all orders will go through APF employee, Amy Chapman.  Amy@porphyriafoundation.org


Long Sleeve Shirts

Price Each- Adult S, M, L $20.00 Each ** X-LG. 2XL, 3XL are $3.00 each more**


Long Sleeve 100% Cotton Pull Over Hoodie

Price Each- S, M, L $40.00 Each ** X-LG. 2XL, 3XL are $5.00 each more**


Long Sleeve 100% Cotton Thick Zip Up Hoodie

Price Each- S, M, L $45.00 Each ** X-LG. 2XL, 3XL are $5.00 each more**


Porphyria Car or Fridge Magnet $8.00 each


Wristbands- 2/$6.00 or $3.00 each Colors are Blue or Purple


Shadow Jumpers Merchandise



Support the APF!

Please support the American Porphyria Foundation today. When you support the APF, you are making a contribution to an organization that provides solid medical information, hope and essential support to those affected by porphyria. You can be proud to be an integral part of the help we provide patients on the road accurate diagnosis, proper care, and hopefully someday a cure.


We welcome donations by phone, mail, fax, or online. If you would like to donate over the phone please call us toll free at 1-866-APF-3635 Monday-Friday from 9:00 a.m. to 4:00 p.m. CST. We only accept VISA or Mastercard over the phone. More options for payment available through the link below.




Research Participation

The phase 3 trials for Givosiran are going on now. The purpose of this study is to evaluate the use of this medication to prevent or reduce attacks and symptoms in those with an acute porphyria (AIP, HCP, VP, ADP). If you are interested in participating for this exciting new trial, call Edrin at the APF 713.266.9617 or 1.866.APF.3635