PAF展品在第40届年度展会上展出,,en,Jill Chertow代表PAF和PA社区参加第40届年度遗传代谢病学会,,en,SIMD,,ar,3月11日至14日在圣地亚哥,,en,PAF与全国尿素周期紊乱基金会合作,,en,在我们的展台上教育提供者有关高氨血症,,en,PAF的目标也是与PAF临床医生建立联系,并吸引研究人员与PAF就PA的研究合作,,en,这次会议是听取代谢紊乱新研究的绝佳机会,,en,新生儿筛查更新和药物治疗的获取和费用问题,,en,女士。,,en,R.D,,en,介绍,,en,基于证据的SERN-GMDI管理指南中对丙酸血症的蛋白摄入建议。,,en,营养指南仍然是一个热门话题,,en SIMD Meeting – March 11 -14, 2018, San Diego, CA
Jill Chertow represented PAF and the PA Community at the 40th Annual Society of Inherited Metabolic Disorders (SIMD) on March 11-14th in San Diego, California. PAF partnered with the National Urea Cycle Disorders Foundation (NUCDF) on our exhibit booth to educate providers about hyperammonemia. PAF’s goal was also to network with PAF clinicians and attract researchers to collaborate with PAF on studies for PA . The meeting was a great opportunity to hear about new research in metabolic disorders, newborn screening updates and issues about access and cost of drug therapies. Elaina Jurecki, M.S., R.D. presented on “Protein Intake Recommendations for Propionic Acidemia in the Evidence-based SERN-GMDI Management Guidelines.” Nutrition guidelines continue to be a hot topic. 有趣的海报主题包括使用医疗食品,,en,肝移植,,en,和anaplerotic治疗,,en,休息时间和用餐时间有时间与医生联系,,en,医疗食品供应商,,en,倡导团体,,en,和工业,,en,mRNA中有许多潜在的新疗法是有希望的,,en,基因治疗,,en,酶替代疗法和/或第一次新的药物,,en, liver transplant, and anaplerotic therapy.
During the breaks and meals there was time to network with physicians, dietitians, researchers, medical food providers, advocacy groups, and industry. There is hope for a number of potential new therapies in mRNA, gene therapy, enzyme replacement therapy and/or new medications for the first time.