Dr. Paller Declares “The Decade of Discovery and Drug Development” for Ichthyosis

The ichthyosis community gathered on January 25, 2025 for Northwestern University’s Winter Warm Up, drawing people from Canada to Indiana and everywhere in between.

The afternoon event was held at Lurie Children's Hospital in downtown Chicago and was the 10th annual meeting hosted by Dr. Amy Paller.

Dr. Paller gave an update on pharmaceutical research, advocacy, and academic research. Dr. Paller pointed to a strong foundation of genetic diagnoses for nearly 2,000 people in the National Registry for Ichthyosis and Related Skin Types. Added to that, she noted interest from several pharmaceutical companies currently in various stages of drug development. For these reasons she declared 2025 – 2035 the “Decade of Discovery and Drug Development,” which brought cheers from the crowd.

Dr. Paller mentioned an effort to rename ichthyosis and some of it’s subtypes such as Netherton, vulgaris, and harlequin. She also explained an effort underway from FIRST, sponsored by Beiersdorf, makers of Eucerin and Aquaphor, to publish an official document that outlines that best practices for care of a newborn with ichthyosis.

The event also included small group discussions in which parents, children, and affected adults shared experiences and offered advice to one another. The conversation groups also contributed insights for researchers who were present.

Researchers onsite were also collecting tape strip samples to include in their study. Most participants find this to be a simple and painless way to help push research forward!  The process involves a clear, circular sticker being applied to the arm, removed, and placed on a research card.

David Artz, a podcaster and teen with IFAP, was recording for his StoryAidHelp Project.

Many thanks to the event’s volunteer organizers and sample sponsors for their support.