Ask The Expert: ABL+ Foundation

An episode of the Living Ultra Rare: The ABL+ Podcast podcast, hosted by ABL+ Foundation, titled "Ask The Expert: ABL+ Foundation" was published on September 14, 2025 and runs 26 minutes.

September 14, 2025 ·26m · Living Ultra Rare: The ABL+ Podcast

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Summary

In this heartfelt and informative episode of "Ask the Expert," host Barry sits down with Paul Biderman, co-founder of the ABL Plus Foundation. Paul shares his personal journey with a rare disease called A-beta-lipoproteinemia (ABL), an illness so uncommon it affects only a few hundred people worldwide. He reveals the immense challenges of a delayed diagnosis, detailing how his mother's persistence led to a correct diagnosis at six months old after doctors initially called it "failure to thrive."The conversation delves into the vital mission of the ABL Plus Foundation, which works to raise awareness in the medical community and advocate for early, accurate diagnoses for three related "ultra-rare" diseases. Paul highlights the critical need for early intervention, as these conditions inhibit the body's ability to digest fat and absorb essential vitamins, leading to neurological issues, gastrointestinal problems, and even blindness. He shares a powerful story of helping an Australian family facing deportation due to their baby's illness. The episode also touches on the daily struggles of managing the condition, including a strict low-fat diet and the challenge of taking up to 50 pills a day.Paul's story is a compelling reminder that rare diseases are more common than you might think, affecting one in ten Americans. He passionately argues that this is a global issue that deserves more awareness and funding. The foundation is currently working to get these illnesses added to newborn screening panels and is even exploring a new, less invasive way to test for vitamin E absorption.To learn more about the foundation's work, their mission to help patients, and how you can get involved, visit https://ablplusfoundation.org/

Episode Description

In this heartfelt and informative episode of "Ask the Expert," host Barry sits down with Paul Biderman, co-founder of the ABL Plus Foundation. Paul shares his personal journey with a rare disease called A-beta-lipoproteinemia (ABL), an illness so uncommon it affects only a few hundred people worldwide. He reveals the immense challenges of a delayed diagnosis, detailing how his mother's persistence led to a correct diagnosis at six months old after doctors initially called it "failure to thrive."

The conversation delves into the vital mission of the ABL Plus Foundation, which works to raise awareness in the medical community and advocate for early, accurate diagnoses for three related "ultra-rare" diseases. Paul highlights the critical need for early intervention, as these conditions inhibit the body's ability to digest fat and absorb essential vitamins, leading to neurological issues, gastrointestinal problems, and even blindness. He shares a powerful story of helping an Australian family facing deportation due to their baby's illness. The episode also touches on the daily struggles of managing the condition, including a strict low-fat diet and the challenge of taking up to 50 pills a day.

Paul's story is a compelling reminder that rare diseases are more common than you might think, affecting one in ten Americans. He passionately argues that this is a global issue that deserves more awareness and funding. The foundation is currently working to get these illnesses added to newborn screening panels and is even exploring a new, less invasive way to test for vitamin E absorption.

To learn more about the foundation's work, their mission to help patients, and how you can get involved, visit https://ablplusfoundation.org/