Earlier this week, representatives at the Illinois House chose to pass House Bill 4576, which is designed to create a Rare Disease Commission.
The purpose of the commission is to offer patients a way to voice their opinions and issues with the state government. Most of these patients are either too young or too sick, and they cannot speak for themselves before the government. The Rare Disease Commission would serve to fill the gap between the patients and the state government.
This is a significant step forward for people living with rare diseases. Most of these illnesses only afflict one out of every 10 Americans. Even though the numbers are against them, it is important for these patients to receive the necessary care and attention to handle their diseases.
The new bill is also designed to offer educational resources for all of the leaders elected to serve on the Rare Disease Commission. These leaders will gain training concerning coverage, access and rare diseases, particularly situations that they will encounter personally.
Now the House bill has been sent to the state senate, where it awaits a decision to pass it.