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hello everyone again my name is chika den yo and Im the director of education programs at Nord Ill be your host for todays webinar on patient registries what they are and how to start one were happy to have you join us today this is actually the second in a new series that weve launched for patients and caregivers we have a number of topics in the works including what is genetic testing and how can it benefit me so please look out for future webinars and we hope that youre able to join us before we get started I like to take a brief moment to talk a little bit about North in case youre not familiar Nord is an organization committed to the identification treatment and cure of rare diseases through education advocacy research and patient services you can learn more about Nords programs services and resources and how to get involved on our website at rare diseases org you can also follow us on Facebook and Twitter we have a number of programs that can help you along your journey a