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Showing posts from February, 2019


Like shards of glass under the skin!
It feels like millions of broken pieces of glass throughout
My body. 
To move is just sheer pain. If you feel like I do, remain optimistic, if you don’t have answers to your health questions, keep searching, stay patient yet persistent!
As my Nurse told me yesterday, speak up speak loud and insist on the best professional care.

Hours turn into days, days turn in weeks, months and years don’t waste your life away. 
Don’t give up! That is my resolve in my life what is yours?

Porphyria Post

February 16, 2019
Coming to a city near you!!
Patient Education and Support Meetings Throughout 2019 the APF will be hosting a dozen Patient Education and Support Meetings across the country. This is a remarkable opportunity to meet fellow porphyria patients and families to share similar experiences. Porphyria experts will also be present at each event either in person or via Skype.
RSVP below to our Phoenix, Ann Arbor, Seattle, Boston, Salt Lake City, and Placentia, CA meetings.
Be on the lookout for more details regarding the upcoming meetings below!
Birmingham, AL New York, NY Winston- Salem, NC Chicago, IL Orlando, FL
Interested in hosting a meeting in your town? Contact Edrin Williams, Director or Patient Services, at
RSVP Today

NEW- Porphyria POST

The APF office will be closed on Monday, February 18, 2019 in observation of President's Day. Normal hours of 9:00am-5:00pm EST will resume Tuesday, February 19, 2019.
Porphyria Awareness Week - April 6-13, 2019 Over the years this time honored tradition has inspired porphyria patients to go out and educate their community on porphyria. Over the years many great ideas have been put into action such as, in 2014 when Amanda Rich made purple bracelets for porphyria survivors or in 2015 when Victor Mejias hosted a fishing tournament for the APF. In 2018, Cassie Tucker and her son created a T-shirt campaign to raise awareness for EPP and donated part of the proceeds to the APF! This is the time to use your hobbies and talents to spread the word about porphyria. There is no limit to what you can accomplish!
What does 2019 hold? Murphy McNutt (PCT) is organizing a fundraiser for the APF at her fitness studio. She is planning a "ride" with the support of…

NEW~ Porphyria Post

Porphyria Post
Porphyria Awareness Week - April 6-13, 2019
Over the next few weeks, the APF will be sharing resources and tools for you to create awareness in your community. Need ideas? Give the APF office a call on 866-APF-3635.
In 2018, countless members raised awareness through conversations, activities, fundraisers and more!! Leann Cook held a raffle at a local store for a donated Yeti cooler with signage about porphyria. Griffin’s sixth grade class all wore purple to honor and remember his mom. Louise Schlosser Braun hosted a table full of APF brochures at a local hospital to train Emergency Room staff and interns. Allison Stuhlsatz wrote for her local blog, the Wichita Moms Blog. Justin and Holly Hamilton were featured in their local newspaper, the Wauneta Breeze, about living with CEP. Dr. Bruce Wang (Porphyria Expert, UCSF) and Mary Schloetter did 17 back-to-back satellite media interviews – all which were written or shared in newspapers and local media across the country. Jare…