July 10, 2020July 10, 2020
Long-term Givlaari Treatment Greatly Lowers AIP Attacks, Study Shows
News
People with acute intermittent porphyria (AIP) who were treated with Alnylam Pharmaceuticals’ RNA-based therapy Givlaari (givosiran) experienced a rapid and lasting ... Read more
July 7, 2020July 7, 2020
Porphyria and Pregnancy
Health Insights
Diseases that are characterized by high levels of porphyrins in the blood, urine, and tissues, are grouped under the name ... Read more
June 30, 2020June 30, 2020
What Are Porphyrins and How Are They Connected to Porphyria?
Health Insights
Porphyria refers to a group of rare diseases characterized by high levels of porphyrins in the blood, urine, and ... Read more
June 23, 2020June 23, 2020
Clinical Trials for Porphyria
Health Insights
There’s currently no cure for porphyria, and only a few therapy options are available to treat the symptoms of ... Read more
June 22, 2020June 22, 2020
Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic
cystic fibrosis, News, syndicated
The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during ... Read more
June 19, 2020June 19, 2020
American Porphyria Foundation Among Winners in Alnylam’s ‘Advocacy for Impact’ Grants
News
Alnylam Pharmaceuticals has awarded a total of $270,000 to seven patient advocacy groups, including the American Porphyria Foundation (APF), in the company’s Advocacy ... Read more
June 16, 2020June 16, 2020
Treatment Plan for Porphyria
Health Insights
Porphyria is a rare disease that affects fewer than 200,000 people in the U.S. Many physicians are, therefore, unfamiliar ... Read more
June 12, 2020June 12, 2020
Givlaari Markedly Reduces AIP Attacks, Phase 3 Trial Shows
News
People with acute intermittent porphyria (AIP) who were treated with Alnylam Pharmaceuticals’ RNA-based therapy Givlaari (givosiran) had a 74% ... Read more
June 9, 2020June 9, 2020
Porphyria and Sleep
Health Insights
If you have porphyria, you likely may regularly have trouble getting a good night’s sleep. There are ways to ... Read more
June 9, 2020June 10, 2020
Coalition Will Address Racial Disparities in Rare Disease Communities
News
The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on reducing racial disparities in ... Read more
June 5, 2020June 5, 2020
Recruiting Underway for New Study Testing Light Exposure Device for EPP
News
A new study testing a light exposure measuring device designed to help people with erythropoietic protoporphyria (EPP) better manage ... Read more
June 2, 2020June 2, 2020
Acute Porphyria and Diet
Health Insights
If you have acute porphyria, it’s important to know that diet and nutrition may help to ease your symptoms. What ... Read more

July 10, 2020July 10, 2020

Long-term Givlaari Treatment Greatly Lowers AIP Attacks, Study Shows

News

People with acute intermittent porphyria (AIP) who were treated with Alnylam Pharmaceuticals’ RNA-based therapy Givlaari (givosiran) experienced a rapid and lasting reduction in porphyria attacks — and most remained attack-free for ... Read more

July 7, 2020July 7, 2020

Porphyria and Pregnancy

Health Insights

Diseases that are characterized by high levels of porphyrins in the blood, urine, and tissues, are grouped under the name porphyrias. It’s important to discuss with your doctor the risks ... Read more

June 30, 2020June 30, 2020

What Are Porphyrins and How Are They Connected to Porphyria?

Health Insights

Porphyria refers to a group of rare diseases characterized by high levels of porphyrins in the blood, urine, and tissues. What are porphyrins? Porphyrins are ring-shaped molecules that undergo ... Read more

June 23, 2020June 23, 2020

Clinical Trials for Porphyria

Health Insights

There’s currently no cure for porphyria, and only a few therapy options are available to treat the symptoms of this group of rare inherited blood disorders. None of them ... Read more

June 22, 2020June 22, 2020

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

cystic fibrosis, News, syndicated

The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will ... Read more

June 19, 2020June 19, 2020

American Porphyria Foundation Among Winners in Alnylam’s ‘Advocacy for Impact’ Grants

News

Alnylam Pharmaceuticals has awarded a total of $270,000 to seven patient advocacy groups, including the American Porphyria Foundation (APF), in the company’s Advocacy for Impact grants program. The second annual program, designed to ... Read more

June 16, 2020June 16, 2020

Treatment Plan for Porphyria

Health Insights

Porphyria is a rare disease that affects fewer than 200,000 people in the U.S. Many physicians are, therefore, unfamiliar with it and its treatment. This could be a major ... Read more

June 12, 2020June 12, 2020

Givlaari Markedly Reduces AIP Attacks, Phase 3 Trial Shows

News

People with acute intermittent porphyria (AIP) who were treated with Alnylam Pharmaceuticals’ RNA-based therapy Givlaari (givosiran) had a 74% reduction in porphyria attacks and sustained decreases in toxic products ... Read more

June 9, 2020June 9, 2020

Porphyria and Sleep

Health Insights

If you have porphyria, you likely may regularly have trouble getting a good night’s sleep. There are ways to help remedy that. What is porphyria? Porphyria refers to a group ... Read more

June 9, 2020June 10, 2020

Coalition Will Address Racial Disparities in Rare Disease Communities

News

The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on reducing racial disparities in the rare disease community. Getting a timely and accurate diagnosis ... Read more