Schnell joins inaugural statewide rare disease advisory council

Author: Deanna Csomo Ferrell

Santiago Schnell, William K. Warren Foundation Dean of the College of Science at the University of Notre Dame, has been appointed to a new statewide advisory council to explore new directions for assisting patients with rare diseases in Indiana.

The 12-person advisory council, formed by the Indiana General Assembly in 2023, will conduct public meetings to survey the needs of patients with rare diseases, then will make recommendations for connecting patients to specialists, affordable and comprehensive health care coverage, diagnostics, treatments and other needed services.

“This signifies Notre Dame’s leadership in finding solutions for rare diseases, which rarely receive the funding and attention required to find therapies and potential cures,” said Schnell, who is the interim director of the Boler-Parseghian Center for Rare and Neglected Diseases. “I look forward to collaborating with the other committee members.”

Rare diseases in the United States are classified as those in which fewer than one in 1,500 people are affected. Each disease affects fewer than 200,000 people in the country, and about 30 million people have a disorder classified as a rare disease. Of the 7,000 rare diseases identified, only five percent have some type of therapy.

The committee’s first responsibility will be to examine and make recommendations for pediatric cancers. Each year, about 16,000 younger than 20 will develop cancer, and 400 of those children and young people are Indiana residents. In contrast, 1.9 million adults will be diagnosed with cancer annually.

The committee, hosted by the Indiana Department of Health, will meet at least monthly until September 2024. After next year the committee will convene at least quarterly.

Originally published by Deanna Csomo Ferrell at on September 29, 2023.