News

November 13, 2020November 13, 2020

Rare Case of AIP Plus Seizures Highlights Importance of Proper Diagnosis

News

A rare case of a woman with acute intermittent porphyria (AIP) complicated by posterior reversible encephalopathy syndrome (PRES), a neurological disorder characterized by seizures, was described in a report. ... Read more

November 6, 2020November 6, 2020

Case Report Describes Man With Two Distinct Porphyria-causing Mutations

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An Argentinian man with two different porphyria-causing mutations was described in a new case report. The unusual findings highlight the importance of thorough clinical and molecular analyses in such ... Read more

November 5, 2020November 6, 2020

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

News, syndicated

The National Organization for Rare Disorders (NORD)’s RareLaunch training program will host two days of free virtual workshops in December, with the aim of empowering leaders to start non-profit ... Read more

October 30, 2020October 30, 2020

AIP Patients Show Enlarged Brain Cavities, Reduced Brain Blood Flow, Study Suggests

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People with acute intermittent porphyria (AIP) have structural changes in the brain, namely an enlargement of the brain’s ventricles — a set of four communicating cavities — associated with ... Read more

October 26, 2020October 28, 2020

UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner

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A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will be featured on the front cover of an upcoming calendar ... Read more

October 23, 2020October 23, 2020

APF Pet Calendar Contest Underway to Support Expert Porphyria Care

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Voting is underway for the 2021 Pet Calendar Contest organized by the American Porphyria Foundation (APF). Through Oct. 30, people can vote for their favorite pets, with each vote ... Read more

October 19, 2020October 19, 2020

Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

News, syndicated

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its use in future appointments, a ... Read more

October 16, 2020October 16, 2020

Panhematin Less Costly Treatment Option for AIP Patients in US, Study Finds

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Treatment with Panhematin (hemin for injection) is associated with a 78% lower average annual total cost of care compared with Givlaari (givosiran) in people with acute intermittent porphyria (AIP) in ... Read more

October 9, 2020October 9, 2020

EPP Prevalence in UK Higher Than Estimated, Analysis Reveals

News

A recent large analysis indicates that the prevalence of erythropoietic protoporphyria (EPP) is nearly 2.3 times higher than previously estimated in the U.K. The analysis of the UK Biobank data set, ... Read more

October 8, 2020October 8, 2020

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

News, syndicated

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare ... Read more