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Jul 23, 2010
It can be difficult to find a diagnosis for a rare disease, and it can be challenging to find reliable testing for porphyria. When you put these things together, patients who suspect they have porphyria can run into some pretty big problems. And sometimes even with a clear diagnosis it can be hard to get the right treatment—if your doctor or insurance company is not familiar, for example, or even because the doctor’s office is far from home or work.
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Jul 22, 2010
If you have are a woman who has frequent AIP attacks and you would like to volunteer for research, please contact Dana Doheny at the Mount Sinai Porphyria Lab: 212-659-6779 or toll-free: 866-322-7963.
The Porphyria Lab is looking for women who have been diagnosed with acute intermittent porphyria (AIP) and have severe recurrent attacks or repeated attacks associated with their menstrual cycles.
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Jul 20, 2010
Past issues of the APF Newsletter are available for download here. To receive the latest newsletter at home in your mailbox and support production of this newsletter and the APF's work, please Join the APF or renew your membership today!
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Jul 19, 2010
The American Porphyria Foundation would love to see all our members and friends on Facebook and Twitter. Come join the discussion, or just read along and learn more about what others with your type of porphyria have to say!
We can't wait to greet you there.
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Apr 26, 2010
Monica Firchow is a long-time volunteer, spokesperson and fund raiser for porphyria research. For National Pophyria Awareness Week this year (April 17-24), she spoke to the local business community about porphyria and, with her business partner, made this very special offer to customers at her shop, Upscale Resale Consignment Boutique, in California's beautiful Central Coast region.
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Apr 14, 2010
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Mar 18, 2010
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Feb 23, 2010
Grey's Anatomy, the ABC medical drama, featured porphyria in its February 18 episode, "The Time Warp." The case showed why acute porphyria is often called "the little imitator" or "the tic-tac-toe" disease.
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Feb 17, 2010
Doctors are building a national Porphyria Patient Registry, and work with erythropoietic protoporphyria (EPP) patients is starting now. You can volunteer to become part of the registry. This will put you in contact with porphyria experts and help them answer questions all patients and family members have about your type of porphyria.
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Dec 21, 2009
National Porphyria Awareness Week will take place from April 17 through April 24, 2010. Raising awareness means reminding more doctors of the diagnosis and its tell-tale signs; educating friends and family members about the symptoms and treatment for different types of porphyria; and raising funds for porphyria research and education.
