EHLERS-DANLOS AWARENESS MONTH

104th Regular Session Introduced by Diane Blair-Sherlock and 11 co-sponsors

Declares May 2026 EDS Awareness Month in Illinois and urges early diagnosis, education, support networks, and continued research toward better care and a cure.

Resolution Adopted

Overview

Bill: HR 893

Session/Jurisdiction: Illinois, 104th General Assembly

Type: House Resolution

Sponsor: Representative Natalie Manley (co-sponsor)

DateFiled: May 12, 2026

Purpose: Declare May 2026 as Ehlers-Danlos Syndrome (EDS) Awareness Month in Illinois and encourage research and funding toward a cure.

Main Purpose and Intent

To recognize Ehlers-Danlos Syndrome (EDS) as a serious inherited connective-tissue disorder and raise public awareness.

To honor individuals living with EDS and their daily challenges.

To promote scientific research and funding aimed at improving diagnosis, treatment, and ultimately finding a cure.

Key Provisions and Changes

Designation: Establish May 2026 as EDS Awareness Month in Illinois.

Emphasis on Early Diagnosis: Highlights the importance of early and accurate diagnosis for better medical planning and quality of life.

Awareness and Education: Encourages efforts to inform the health care community and the public about EDS and associated conditions such as postural orthostatic tachycardia syndrome (POTS), which affects many individuals with EDS.

Support Networks: Endorses the value of EDS support groups to connect patients, inform clinicians, and guide public understanding.

Research and Funding: Urges continued scientific research and funding to advance understanding, treatment options, and potential cures for EDS.

Who or What Would Be Affected

Individuals living with EDS and their families, who would benefit from heightened awareness and recognition.

Healthcare providers and medical researchers, who would receive emphasis on education, diagnosis, and potential research collaboration.

EDS support groups and patient advocacy organizations, which may leverage the designation to promote outreach and resources.

Illinois constituents and the public, who would gain increased awareness of EDS and associated conditions like POTS.

Procedural and Timeline Aspects

Status: Filed as a House Resolution on May 12, 2026.

No fiscal implications, regulatory changes, or enforcement mechanisms are described in the text of the resolution.

The resolution is a ceremonial designation intended to signal awareness and support rather than create new laws or programs.

If enacted, observance would occur in May 2026; ongoing impact would depend on subsequent actions by state agencies or organizations to promote awareness.

Summary

HR 893 is a ceremonial resolution in the Illinois House recognizing Ehlers-Danlos Syndrome and declaring May 2026 as EDS Awareness Month. It emphasizes the importance of early diagnosis, education for the medical community and public, and support networks, while encouraging ongoing research and funding toward improved care and a potential cure. The measure seeks to honor and support those affected by EDS and raise visibility of the condition within the state.