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Finnian, nicknamed Finn, can show us a thing or two about promoting porphyria awareness. He wears his American Porphyria Foundation bandana proudly. The APF gave bandanas to all the pets, who entered the APF Pet Beauty Contest a few years ago. Finn is a 7 year old yellow lab. His mom is APF member, Kelsey Castro who says of Finn:
He is my best buddy! He is always by my side, especially when I'm not feeling well... I think he can sense it. I got him when I was 14 and in high school, and I'm now in college. Finn has been my best friend through lots of hard times. His favorite thing to do is go on hikes at a local nature reserve by my house and curling up by our wood stove in the winter.
28 February 2015 - Rare Disease Day. It takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
Our APF members set a great example of different activities that increase awareness in their local communities. Let's continue the tradition! In preparation for NPAW, April 11-18, 2015, the APF will send you a packet with brochures, a complimentary DVD and extra materials if you would like to distribute information in your area.
This week more than 40 porphyria experts, PTF trainees and clinical research coordinators will be meeting at University of Texas Medical Branch in Galveston, TX to advance the porphyria education and research training.
Training agenda items include, but not limited to:
In preparation for National Porphyria Awareness Week, April 11-18, 2015, the APF will send you a packet with brochures, a complimentary DVD and extra materials if you would like to distribute information in your communities.
Everyone loves a cowboy love story, and you will love this true story about APF member, cowboy Scott MacMeeken and his beautiful bride Michelle. After they married, Scott saw firsthand how difficult it was for Michelle to live with the severely photosensitive porphyria, Erythropoietic Protoporphyria (EPP). Like many EPP patients, Michelle suffered from the searing pain and swelling upon venturing into the sunlight. EPP patients are often seen jumping from shadow to shadow to avoid the painful light.
Tara Cantley is one of the most recent patient volunteers to enroll in the Longitudinal Study, Panhematin Study and the Natural History Study of Acute Liver (Hepatic) Porphyria.
The APF just came back from the 56th ASH Annual Meeting, which was held in San Francisco, CA. More than 20,000 hematologists and health professionals in the field were in attendance. The APF educated physicians, professionals and everyone interested.
The American Porphyria Foundation will be hosting the patient educational meeting on December 7, from 4 pm to 6 pm at Hyatt Regency Five Embarcadero Center, Room: Garden A, San Francisco, CA 94111.