August 21, 2020August 21, 2020
AHP Patients at Age 50 Should Be Screened for Liver Cancer, Study Suggests
News
The U.S. incidence of the most common form of liver cancer — called hepatocellular carcinoma (HCC) — in people ... Read more
August 18, 2020August 18, 2020
Unexplained Pain and My 19-year Search for Answers
"One Thousand Flaming Swords" – a Column by Claire Richmond, Columns
When Desiree Lyon, founder of the American Porphyria Foundation, described to a doctor her first attack of acute intermittent ... Read more
August 18, 2020August 18, 2020
Acute Porphyria Attacks
Health Insights
Porphyrias are a group of genetic disorders characterized by high levels of porphyrins in the blood and tissues. There are ... Read more
August 17, 2020August 17, 2020
EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US
News, syndicated
The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare ... Read more
August 14, 2020August 14, 2020
New Streaming Channel Showcases Rare Disease Films
News, syndicated
When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers ... Read more
August 11, 2020August 11, 2020
Porphyria and Menstruation
Health Insights
Porphyria refers to a group of genetic disorders characterized by high levels of porphyrins in the blood and tissues. ... Read more
August 7, 2020August 7, 2020
Hormone Therapy May Be Cause of Porphyria in Transgender Woman
News
Excessive levels of estrogen associated with hormone therapy changes and risk factors such as smoking may lead to porphyria ... Read more
August 4, 2020August 4, 2020
Will My Child Inherit My Porphyria?
Health Insights
If you have a rare genetic disease like porphyria, you may be wondering whether your children could inherit the ... Read more
July 28, 2020July 28, 2020
How Do Doctors Diagnose Porphyria?
Health Insights
Porphyria is a group of genetic disorders in which there are high levels of porphyrins in the blood and ... Read more
July 24, 2020July 24, 2020
HMBS Lack Seen to Affect Mitochondria, Cause Depression in AIP Mouse Model
News
Severe lack of hydroxymethylbilane synthase (HMBS) — the defective enzyme in people with acute intermittent porphyria (AIP) — led ... Read more
July 21, 2020July 21, 2020
How May Porphyria Affect My Lifespan?
Health Insights
If you’ve been diagnosed with porphyria — one of a group of disorders characterized by very high levels of ... Read more
July 17, 2020July 17, 2020
Antivirals Seen to Prevent Porphyria Cutanea Tarda in Hepatitis C Patients
News
Antiviral treatment can prevent the onset of porphyria cutanea tarda (PCT) in people with hepatitis C and urine abnormalities indicating this ... Read more

August 21, 2020August 21, 2020

AHP Patients at Age 50 Should Be Screened for Liver Cancer, Study Suggests

News

The U.S. incidence of the most common form of liver cancer — called hepatocellular carcinoma (HCC) — in people with acute hepatic porphyrias (AHP) warrants cancer screening beginning at ... Read more

August 18, 2020August 18, 2020

Unexplained Pain and My 19-year Search for Answers

"One Thousand Flaming Swords" – a Column by Claire Richmond, Columns

When Desiree Lyon, founder of the American Porphyria Foundation, described to a doctor her first attack of acute intermittent porphyria (AIP) at the age of 17, she likened it ... Read more

August 18, 2020August 18, 2020

Acute Porphyria Attacks

Health Insights

Porphyrias are a group of genetic disorders characterized by high levels of porphyrins in the blood and tissues. There are several types of porphyrias, each with different symptoms and disease progression. Patients ... Read more

August 17, 2020August 17, 2020

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

News, syndicated

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. ... Read more

August 14, 2020August 14, 2020

New Streaming Channel Showcases Rare Disease Films

News, syndicated

When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the ... Read more

August 11, 2020August 11, 2020

Porphyria and Menstruation

Health Insights

Porphyria refers to a group of genetic disorders characterized by high levels of porphyrins in the blood and tissues. Several types of porphyria exist, each with different symptoms and ... Read more

August 7, 2020August 7, 2020

Hormone Therapy May Be Cause of Porphyria in Transgender Woman

News

Excessive levels of estrogen associated with hormone therapy changes and risk factors such as smoking may lead to porphyria cutanea tarda (PCT) in transgender women, a case study reported. The findings ... Read more

August 4, 2020August 4, 2020

Will My Child Inherit My Porphyria?

Health Insights

If you have a rare genetic disease like porphyria, you may be wondering whether your children could inherit the disease. Differing types of porphyria can have different inheritance patterns, and their disease-causing ... Read more

July 28, 2020July 28, 2020

How Do Doctors Diagnose Porphyria?

Health Insights

Porphyria is a group of genetic disorders in which there are high levels of porphyrins in the blood and tissues. Each type of porphyria has different symptoms and disease ... Read more

July 24, 2020July 24, 2020

HMBS Lack Seen to Affect Mitochondria, Cause Depression in AIP Mouse Model

News

Severe lack of hydroxymethylbilane synthase (HMBS) — the defective enzyme in people with acute intermittent porphyria (AIP) — led to abnormalities in mitochondria essential for cellular energy, and to depression-like symptoms in ... Read more