"I am very grateful for having the American Porphyrias Foundation in our lives. They provide much needed information to individuals, families, and doctors alike."

~ Dr. Gregary Edwards, PhD and family.

The American Porphyria Foundation empowered me to understand everything about my illness. Just knowing there were others like me in the APF community that had regained their health, gave me hope that no matter how bad it got, one day I could be healthy again.

~ Nicole Castellano

"The American Porphyria Foundation has been a constant resource of knowledge, support and care, that I couldn't live without!”

~ Louise Schlosser, AIP

"The APF has provided those with Porphyria, such as myself, with not only an answer to an invisible pain but also a strong support system so that we'll never feel alone in the dark." 

~ Pierre Mouledoux - Metairie, LA.  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, AIP

"The APF has provided me with a ton of resources that have allowed me to confidently travel around the world.  It has given my family and me access to information and a community for support."

~ Mellisa Nagin, VP

"Tracy is a beautiful, brave and caring person in every way.  She introduced me to AIP on our first date. She wasn’t afraid to tell me.  She wanted me to accept her from the start.  But she also wanted to meet someone who wouldn’t feel that this disease defined who she is.  I am thankful for her to be in my life.  And I am thankful that she has the APF in hers.​."

~ Michael and Tracy Yelen-Nudo, AIP

"The APF has been instrumental in finding a support system for the proper management of my AIP, and finding fellow sufferers of this challenging condition. In any chronic illness, it's integral to find like-minded communities and the APF is certainly a beacon of light at the end of a dark tunnel for me."

~ Brad Ballinger, AIP

"The APF has given me so much confidence and has helped me not be ashamed of having Porphyria. I have gained an amazing family who I can confide in and who understands me. The APF is awesome and are my lifesavers!​ Never be ashamed of being different. Different helps your light shine through."

~ Katie Fabian, EPP

"The APF and Doctors have been a blessing because I got the right medication for me Panhematin works.  Thank You APF!"

~ Carlos Johnson, AIP

"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 was instrumental in helping us to navigate through the confusion after Greg’s porphyria (PCT) diagnoses; we didn't know which end was up. Their noteworthy support,
abundance of information, and care recommendations are simply remarkable…they “get it” and are always willing to help! We can't begin to thank you enough!"

~ Greg and Julie Wilkerson, PCT

"Despite it all I have a positive attitude due to my amazing family, friends and support team. Everyone that I have met through Facebook, the APF, and re groups have been there for us and we are grateful."

~ Amanda Rich, AIP

"The APF has saved me, taught me so much about my disorder and help me understand my disorder. Thru the APF I've found a home, friends and a future."

~ Victor Mejias, EPP

"The APF has been there for me since I was first diagnosed. My mom actually made a donation to the APF to get the porphyria live DVD and brochures. It was very helpful information at a critical time. Then as I was able to navigate my Facebook again I found the APF groups extremely helpful now the people that are in the groups are like an extended family." 

~ Amanda Boston, VP

"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

“APF is not only a support system for me, but also for my family. Being able to communicate with other members makes you feel less alone and even though most of us have never met face to face, it is like we have all been friends for years.”

~ Alicia Moczynski, XLP

"The APF has given me support and a better understanding of my boys' disease. 
It provides constant updates so that I am able to stay informed and help my kids stay healthy."
~ Lee Ann Cook~ Vernon, Texas

"The American Porphyria Foundation has been my support group, my fountain of knowledge, my rock!"

~ Terri Witter, AIP

“The APF has been our beacon in the ocean. It is our foundation of knowledge and support that has been helping us to better understand the CEP. The APF connects our family with the other members, so we don't feel alone fighting the disease. I hope the APF's research attempts and clinical trials will help facilitate in finding a cure one day."

~ Nichole Zimmardo, CEP

"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!"    

~ Megan Voelker

"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

"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 similar and even more challenging symptoms."

~ Angela Houck

"The APF has enabled our family and physicians to keep updated on porphyria diagnosis, treatment and the latest research."

~ Jessica Ivey 


Welcome to the 2019 APF Pet Calendar Contest – YOUR pet can win a coveted spot on this fun and informational calendar! The final 12-month wall calendar will feature your wonderful animals, porphyria facts, tips, and important dates. Click here for more info


Do you have Erythropoietic Protoporphyria (EPP)?
We need you to participate in research! Get involved TODAY!

Phase 2 clinical trial for MT-7117, an investigational drug for EPP, has begun. This trial is being conducted to assess
effectiveness and safety of an oral investigational drug on sunlight exposure duration and tolerance in individuals
with EPP. Click here for more info



A new program supported by the American Porphyria Foundation for children living with Erythropoietic Protoporphyria (EPP)
Check out all the valuable resources: http://www.porphyriafoundation.com/content/Shadow-Jumpers​


 Volunteer for Research  ♦

Givosarin Study​ ~ Acute Porphyrias (types to be announced)
Longitudinal Study ~ All Porphyrias
For more Information Contact Edrin at the Apf, 1.866.APF.3635

"Remember.....Research is the key to your cure!"



 AIP, HCP, VP Access to Care Toolkit 


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