Bill
SJ 254
Designates May as Ehlers-Danlos Syndromes Awareness Month in Virginia, focusing on awareness, education, and outreach without creating new programs or funding.
A. Purpose and Intent
- Designates May 2025, and each succeeding year, as Ehlers-Danlos Syndromes Awareness Month in Virginia.
- Serves as a ceremonial acknowledgement by the Virginia General Assembly to increase awareness and understanding of Ehlers-Danlos syndromes (EDS) and related conditions.
- Instructs the Clerk of the Senate to transmit the resolution to the Ehlers-Danlos Society and to post the designation on the General Assembly’s website.
B. Key Provisions
- Recognition: May is designated as Ehlers-Danlos Syndromes Awareness Month in Virginia for 2025 and all subsequent years.
- Outreach: The Clerk of the Senate should notify the Ehlers-Danlos Society of the General Assembly’s designation.
- Visibility: The designation must be posted on the General Assembly’s website for public access.
- Nature: The bill is a joint resolution (SJ254ER) and is ceremonial in nature; it does not create or fund programs, nor establish new state obligations beyond recognition and outreach.
C. Background and Context (Recitals)
- EDS is a group of heritable disorders affecting connective tissues (skin, tendons, ligaments, blood vessels, internal organs, bones).
- There are 14 recognized types of EDS, including hypermobile EDS, classical EDS, vascular EDS, and others.
- EDS arises from genetic variants affecting collagen and related proteins; diagnosis can be challenging due to variability across types and individuals.
- Hypermobile EDS is the most common type, with estimates of prevalence around 1 in 3,100–5,000, though true prevalence may be higher.
- Some EDS types can be identified genetically; however, there is no genetic test for hypermobile EDS.
- EDS is associated with comorbidities such as dysautonomia, mast cell diseases, and postural orthostatic tachycardia syndrome.
- There is no cure; increased awareness and research are seen as steps toward better support and outcomes for affected individuals.
D. Affected Parties
- Individuals living with EDS and their families in Virginia.
- Medical professionals and healthcare systems involved in diagnosing and treating EDS and related conditions.
- The Ehlers-Danlos Society and related advocacy organizations.
- General public and institutions seeking to improve understanding of connective-tissue disorders.
E. Procedural Timeline and Status
- Introduced: January 6, 2025 (prefiled); Offered January 8, 2025.
- Referred to Rules Committee; later reported from Rules (Feb 17, 2025).
- Read and passed in the Senate; agreed to by the Senate on January 22, 2025.
- Enrolled and agreed to by the House on February 20, 2025.
- Final enrolled status: SJ254ER (Designating May as EDS Awareness Month).
F. Practical Implications
- No funding or new state program is created.
- A symbolic, public-facing recognition intended to raise awareness and potentially bolster advocacy and education efforts.
- May encourage collaboration with advocacy groups and dissemination of information about EDS within Virginia communities and healthcare settings.
G. Summary
SJ254ER is a ceremonial joint resolution that designates May as Ehlers-Danlos Syndromes Awareness Month in Virginia beginning in 2025 and continuing annually. It emphasizes awareness, education, and outreach, directs official transmission to the Ehlers-Danlos Society, and requires posting on the General Assembly’s website.
Compiled from official sources — confirm details with the bill’s official record.
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