H.Res. 611 is expected to be considered on the floor of the House on Wednesday, July 21, 2010, under a motion to suspend the rules, requiring a two-thirds vote for passage. The legislation was introduced by Rep. Phil Hare (D-IL) on July 7, 2009.
H.Res. 611 would resolve that the House of Representative:
- “Supports the goals and ideals of “Fragile X Awareness Day”;
- “Supports raising awareness and educating the public about fragile X syndrome and associated disorders;
- “Applauds the efforts of advocates and organizations that encourage awareness, promote research, and provide education, support, and hope to those impacted by fragile X syndrome;
- “Recognizes the commitment of parents, families, researchers, health professionals, and others dedicated to finding an effective treatment and cure for fragile X syndrome;
- “Urges all physicians, health care providers, and specialists to—
- “Learn the clinical signs and symptoms of fragile X syndrome, fragile X-associated disorders, fragile X-associated primary ovarian insufficiency, and fragile X-associated tremor/ataxia syndrome;
- “Use diagnostic, developmental screening, and surveillance modalities to detect fragile X-associated disorders;
- “Test, when appropriate, individuals exhibiting signs of developmental delay or an autism spectrum disorder to determine the status of their FMR1 gene;
- “Gain a full understanding of the genetic implications of all fragile X-associated disorders, and when appropriate, make a referral to a geneticist or genetic counselor to assure that affected individuals and their families are aware of how a fragile X-associated disorder may impact their extended family; and
- “Provide patients diagnosed with fragile X-associated disorders with supplemental information maintained by the Centers for Disease Control and Prevention, the National Institute of Child Health and Human Development, and private foundations such as the National Fragile X Foundation and the FRAXA Research Foundation;
- “Encourages all private and public health insurance entities to provide full coverage for screening technologies, appropriate followup referrals, and genetic counseling services related to the detection, proper diagnosis, and treatment of fragile X-associated disorders;
- “Recommends that the National Institutes of Health and related member institutes fully implement the research plan on fragile X syndrome and associated disorders developed by the Trans-NIH Fragile X Research Coordinating Group and Scientific Working Groups; and;
- “Supports increased funding for research into the causes, treatment, and cure for fragile X syndrome.”
According to the resolution’s findings, advocacy organizations have designated July 22 as “Fragile X Awareness Day”.