Porphyria Care

11/26/2011

We find more and more Porphyria studies these days. Have you ever been in a study for Porphyria?

The porphyrias are a group of genetic diseases caused by disturbances in the formation of heme, an essential component of hemoglobin and other proteins, leading to either acute (neurologic) and/or chronic (cutaneous) symptoms. Acute porphyria is often difficult to diagnose because symptoms may be no...

11/24/2011

Happy Thanksgiving Everyone!

10/23/2011

What surprised you about Porphyria?

Porphyria has been linked to vampirism and to some extent to the legend of werewolf in pop culture. There have been notable cases in the past which gave birth to the notion of existence of ...

07/20/2011

One of the best AIP websites. The website has resources for those with AIP and resources for doctors. What other websites have you found helpful?

Diagnosing Acute Intermittent Porphyria (AIP) may be challenging. Here is AIP information for physicians and patients.

06/29/2011

What do you want to know about Porphyria?

06/28/2011

We love to post blogs related to Porphyria. This allows us all to learn from each other. If you write a blog about Porphyria, please share the link in the comments below.

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06/21/2011

Sometimes hope is just being believed - Acute Intermittent Porphyria http://ow.ly/5mGba

06/19/2011

Happy Fathers Day to all the wonderful Dads!

06/18/2011

We all know to stay away from Alcohol. But did you know it exacerbates Porphyria Cutanea Tarda?

Alcohol can damage skin causing rosacea, porphyria cutanea tarda, post-adolescent acne, discoid eczema and psoriasis.

06/16/2011

The blog "Porphyria: A Royal Pain" is the story of Jan in her own words as she searches for medical answers to Porphyria. Do you have a blog about Porphyria?

03/15/2011

A story about Porphyria, and you can tell your story too. Have you ever told your story to anyone outside your family?

I don't have this disease, as far as I know anyway. My daughter, who is 16, does however. She was just diagnosed on Friday, March 11th but h...

03/13/2011

There are a lot of website that provide resources for Porphyria. What are your favorite sites?

Testing for Acute intermittent porphyria online. Medical Assessment Online has developed a comprehensive computer-based medical history questionnaire system to assess whether you have Acute intermittent porphyria or not.

02/28/2011

A woman with AIP that has pasted away, is giving to the The British Porphyria Association and asking you to do the same.

JustGiving - the easiest way to fundraise and donate to charity online

02/21/2011

A great resource for Acute Intermittent Porphyria.

Prompt testing and diagnosis of Acute Intermittent Porphyria are important for appropriate clinical care.

02/20/2011

We are working hard to create a resource page to help. If you have any suggestions, please feel free to leave a comment below.

02/19/2011

Victoria's story about Erythropoietic Protoporphyria (EPP).

As part of our ongoing focus on erythropoietic protoporphyria (EPP), we’ve invited Victoria to share her experiences with EPP on the blog. -- My name is

02/19/2011

For the best general information about Porphyria, visit the American Porphyria Foundation website.

The information contained on the American Porphyria Foundation (APF) Web site or in the APF newsletter is provided for your general information only.