LCFAOD Features

Two-Day Virtual Conference Will Explore Fatty Acid Oxidation Disorders

The world’s signature academic event for scientists who study fatty acid oxidation disorders (FAODs) is scheduled to take place virtually October 27-28, 2021. The two-day annual conference is hosted by INFORM, the International Network for Fatty Acid Oxidation Research and Management.  In previous years, 100 to 200 people have attended the meeting, said Jerry Vockley, MD, PhD,…

Hagit Baris-Feldman

Israel Emerges as Global Powerhouse in Rare Disease Research

When it comes to rare disorders, Israel—a New Jersey-sized nation of 9.3 million that’s made headlines this year for its highly successful coronavirus vaccination campaign—is clearly an emerging powerhouse. 

Ultragenyx CMO Camille Bedrosian

Improving the Lives of Patients With LCFAOD

NOVATO, California — Not long ago, most people with long chain fatty acid oxidation disorder (LCFAOD) had few options for treatment other than snacking on low-fat, high-carbohydrate nutrients every 2 to 6 hours to prevent liver damage. But that has changed in the last 12 months. Triheptanoin (Dojolvi®) on June 30, 2020, became the first…

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NORD Recognizes Progress in Fight Against Rare Disease With 2021 Rare Impact Awards

Under COVID-19’s lingering shadow, the National Organization of Rare Disorders (NORD) has presented its 2021 Rare Impact Awards to 24 pharmaceutical firms, researchers, politicians, and nonprofit groups for their efforts over the past year on behalf of patients with such illnesses.

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FDA, CDC Urge COVID-19 Vaccines for Rare Disease Patients on NORD Webinar

As the super-contagious Delta variant of COVID-19 sweeps across the globe, driving up infection rates as well as deaths, top US health officials are urging everyone 12 and older—including the country’s 30 million or so rare disease patients—to get vaccinated quickly.

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