March , 2019

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CHICAGO, IL – In an effort to increase awareness and treatment options for those with rare diseases, state Rep. Sonya Harper, D-Chicago, advanced her first piece of legislation out of committee last week, in hopes that those with rare diseases will soon have the resources they need to get lifesaving treatment.

“Despite the inconceivable technological innovations that have been made in the medical field over the past few decades, symptoms of rare diseases are still often wrongly diagnosed and vital information is not shared with other doctors,” said Harper. “Many lives could be saved if doctors understood how to diagnose and treat these disorders.”

The unpaid task force will be made up of 15 members. The task force will offer recommendations to the Governor and the General Assembly on the use of advanced drugs and therapies, legislation that could improve the lives of patients with rare diseases, and screening of newborns for the presence of genetic disorders. Harper hopes this bill will expand access to both diagnoses and treatment that would otherwise not be available.

Rare diseases, by definition, may each impact fewer than 200,000 people, sometimes only impacting a few hundred people. As a result, some sufferers may be isolated and unable to receive the correct diagnoses or treatment. Commonly-known rare diseases that will be looked at in this task force include: sickle-cell anemia, ALS (Lou Gehrig’s disease), cystic fibrosis, muscular dystrophies, and Huntington’s disease.

“The name ‘rare disease’ makes it easy to overlook, but you’d be surprised to hear how many Illinoisans are affected by rare diseases,” said Harper.” “I want to be a part of making sure that all people suffering from rare diseases can get access to life-saving medication, treatment and accurate information to improve their recoveries and quality of life.”

Harper’s House Bill 4576 was approved by the House Human Services Committee last week.

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