Online SCID Presentation Features IDF Medical Advisory Committee Chair

Rebecca Buckley, MD, Chair of the IDF Medical Advisory Committee and the J. Buren Sidbury Professor of Pediatrics and Professor of Immunology at Duke University, will present a videocast hosted by the National Institutes of Health (NIH) titled, “Severe Combined Immunodeficiency: Lessons Learned and Hope and Concerns for the Future.” This is a component of

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PerkinElmer Presents Webinar on Cost Effectiveness of SCID Newborn Screening

On April 17, 2014, PerkinElmer will be presenting a free webcast with Dr. Isabelle Durand-Zaleski of the Paris Health Economics and Health Services Research Unit to discuss the cost effectiveness of implementing newborn screening for Severe Combined Immune Deficiency (SCID). The presentation will look at the costs of screening all newborns and at the cost

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Nebraska takes steps to add SCID to newborn screening panel

The Nebraska Department of Health and Human Services has proposed a regulation change that will allow the state to start newborn screening for SCID starting July 1, 2014. They will hold a hearing to accept comments on the proposed change on Thursday, March 20, 2014. Written comments can also be submitted online. To find out

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Arizona bill would require study of adding SCID newborn screening

Representatives in Arizona introduced HB 2491, an act amending section 36-694, Arizona revised statutes; relating to the newborn screening program. In addition to allowing the department of health to designate another laboratory to process newborn screening tests and requiring the adoption of newborn screening for Critical Congenital Heart Disease, this bill also allows the department

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Newborn Screening Would Save Lives – Opinion piece published in the Baltimore Sun

IDF President and Founder Marcia Boyle advocates for the inclusion of SCID newborn screening in Maryland with an opinion piece published in the Baltimore Sun –   A Routine Test Could Save Babies Born with ‘Bubble Boy Disease,’ Yet the State Repeatedly Fails to Budget for It http://www.baltimoresun.com/news/opinion/oped/bs-ed-newborn-screening-20140210,0,1970795.story By Marcia Boyle 12:36 p.m. EST, February

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South Carolina to add SCID to their Newborn Screening Panel

On Thursday, South Carolina’s Department of Health and Environmental Control announced they will soon be screening all newborns for Severe Combined Immune Deficiency! South Carolina plans to have the staff and equipment in place to begin screening by Summer 2014. To read the AP story on the announcement, go to http://www.thestate.com/2014/01/23/3223170/apnewsbreak-dhec-adding-newborn.html. To find out how you can

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Washington State Screening for SCID

Effective January 1, 2014, newborns in Washington state are now being screened for Severe Combined Immune Deficiency! Washington is the 18th state to begin screening for SCID. You can read more about the new screening at on the Washington State Department of Health website. To learn more about what you can do in your state

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Oklahoma Board of Health Approves SCID Screening

At the December 10, 2013 meeting of the Oklahoma Board of Health, the Board unanimously approved the proposed rule amendment to add SCID to the state’s newborn screening panel. You can read the proposed rule change as it was approved at http://www.ok.gov/health2/documents/310-550%20Packet.pdf . The state will now begin the process of implementation with validation of

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SCID Newborn Screening in California – A Family’s Story

Annalou was the first baby to be diagnosed with SCID as a result of newborn screening in California. She is now a healthy two-and-a-half-year-old little girl bringing joy to her family, thanks to early diagnosis and treatment. Watch Annalou’s family tell their story on the IDF Advocacy Channel.

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Washington State to Screen all Newborns for SCID

  Following a lot of hard work from the Washington State Department of Health and advocates throughout the state, the State Board of Health unanimously approved the proposal to add SCID to Washington’s newborn screening panel at their meeting on October 9,2013! The Department of Health is committed to implement testing in January 2014. To read

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About IDF SCID Newborn Screening
Severe Combined Immunodeficiency (SCID) is a primary immunodeficiency disease. Babies with SCID appear healthy at birth, but without early treatment, most often by bone marrow transplant from a healthy donor, these infants cannot survive. It is imperative therefore that newborn screening programs are established in all 50 states.

This blog is sponsored in part by PerkinElmer

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