** Update: EPP patients met with FDA. ** August 2, 2013 was a memorable day for the APF members, who met at the FDA to explain Erythropoietic Protoporphyria (EPP) and asked that the FDA approve Afamelanotide/SCENESSE for EPP. Most of the attendees had participated in the Phase II and Pha
"The APF is the one organization that truly looks out for the patients suffering from porphyria. Whether providing information on doctors, organizing support groups, contacting you about drug trials or sending updates about the FDA, the APF is the best resource for patients, and my family and I cannot thank them enough for all the work they do."
--Andy Turell, EPP
“The APF has helped me; my family and my doctor navigate through the complexities of proper diagnosis and treatment here in the US and abroad. Thank you APF.”
--Megan Parrish Davenport
"No matter what type of Porphyria you have, we are all in this together and we can support and help each other - thank you to the American Porphyria Foundation for helping us all connect with each other."
--Amy Rose Burke, PCT
"Knowing the APF exists is like finding that long-lost friend that you had hoped you would find again someday. Knowing there are people who truly understand your "invisible" disease and are fighting to make things better gives you peace of mind, makes you realize we are not alone in this world."
--Drew Garrett, EPP
"APF has helped me to further understand EPP as well as invested time in my situation through their clinical studies."
--Arthur Shull, EPP
"The APF has been an amazing resource that I would be lost without! The APF has given me and my family the knowledge necessary to understand the complexities of AIP and the ability to network with others who are living with the various types of porphyria. Simply knowing that I am not alone in this has provided me with the support and hope I needed to live life to the fullest!"
"The American Porphyria Foundation has been my support group, my fountain of knowledge, my rock!"
--Terri Witter, AIP
"APF give me the hope, strength, courage and help to begin healing!"
--Vivian Evans, PCT
"Without the support of the APF I would never have accomplished all I have. I have always had great peace of mind knowing that whatever came up in my care with having Porphyria I would have the best of help through this amazing organization. Because of this I have been able to live my life to the fullest with a challenging illness with complete peace of mind. THANK YOU APF for everything you do for so many of us!”
--Lauren Warren, AIP
"The APF provided me with great comfort knowing there is a comprehensive source of information related to these painful afflictions. Through the APF, we can share our concerns, compassion and experiences to help lessen any burdens that others may have."
--Michael Drew, AIP
"EPP has always made me feel alone. I've never known anyone else to have it. But with the APF, I find myself understanding what the people in the articles feel. I actually can relate to their pain. I'm no longer alone."
--Diana Ijames, EPP
"What the APF means to me:
Constant support for today, and hope for a healthy future.
A support system of caring people who understand the challenges that come from having AIP.
I have met so many amazing people thru the APF. It makes having AIP easier to handle......not feeling alone."
--Tracy Yelen, AIP
"The AMERICAN PORPHYRIA FOUNDATION has provided me with a better understanding of the porphyrias and constant source of up-to-date information on my type.
It has also helped me realize there are many other people with simliar and even more challenging symptoms."
"The APF has enabled our family and physicians to keep updated on porphyria diagnosis, treatment and the latest research."