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U.S. Congress Federal Government Professional Societies Future and Ongoing Advocacy Initiatives |
Professional Societies CAHF recognizes that any SMA carrier screening protocol will require a public - private partnership. It is imperative that the professional societies representing the providers most likely to guide patients through the carrier testing process are aware of SMA and SMA carrier screening protocols. CAHF has participated in several high profile educational forums sponsored by medical associations and societies seeking to learn more about SMA. In November 2006, CAHF participated in a panel at a national event sponsored by the American College of Medical Genetics (ACMG) at Jacobi Medical Center in New York City to speak about the importance of screening for pan-ethnic disorders. During the event, experts in genetics from across the country discussed the merits of carrier screening and the importance of developing a national screening panel. CAHF continues to work closely with ACMG leadership on the development of professional guidelines for SMA carrier screening. CAHF was also featured presenter at the October 2007 Annual Meeting of the National Society of Genetic Counselors (NSGC). Genetic counselors are health professionals with specialized graduate degrees and experience in the areas of medical genetics and counseling who provide information and support to families who are at risk for various inherited disorders. The purpose of CAHF's event was to educate genetic counselors about SMA and the importance of carrier screening. CAHF distributed its educational materials at the conference. |
