General News

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.

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.

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!

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.

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.

APF member LeeAnn Cook and her two sons were featured in an article in their hometown newspaper, just in time for National Porphyria Awareness Week. LeeAnn's two sons both suffer from erythropoietic protoporphyria (EPP). Of the community response to the local article, LeeAnn writes:

National Porphyria Awareness Week is coming up soon, what will you do this year to educate your community about porphyria?

Get the porphyria story into local media

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.

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.

Now you can support porphyria research when you do your holiday shopping, or buy anything else you need from Amazon.com. The following vendors have generously agreed to give money to the APF for every purchase you make with them.