National Institutes of Health conducting a Webinar today on Rare Diseases

For all who are able to tune in to this webinar today at 2.30 p.m. eastern time. Please refer to the links below for more details. Undiagnosed Diseases Program - Community Input webinar 10/17/12 2:30 pm ET Start Time: 10/17/2012 2:30 PM ET Duration: 90 minutes URL: https://webmeeting.nih.gov/udp-community_input/ Conference Number(s): 1-800-201-2375 Participant Code: 471324 The Office of Rare Diseases Research- NCATS and the National Human Genome Research Institute are hosting a webinar to provide information to the patient community about a new NIH initiative to expand the Undiagnosed Diseases Program (UDP). In addition, significant time will be dedicated to discussing the issues listed below. We will use the information discussed to help in the selection process of clinical sites for the expanded UDP. This webinar is not to solicit new patients nor to answer diagnostic questions. The physical and financial costs of the diagnostic odyssey What are the major barriers to obtaining a diagnosis? Ready access to specialists, including: Inablity to see a specialist necessary to help obtain an accurate diagnosis Number of specialists seen in order to get an accurate diagnosis Issues getting specialists to talk to each other (coordinated care) Travel requirements (restrictions or limitations due to disease), including: Number of times have traveled out of town to be seen by a doctor when trying to get an accurate diagnosis Number of times have traveled out of state to be seen by a doctor when trying to get an accurate diagnosis Distance needed to travel ever prevented seeing a doctor to get an accurate diagnosis Farthest distance have traveled in order to be seen by a doctor when trying to get an accurate diagnosis Ease of Access to Newer Diagnostic tests, including Problems gaining access to newer imaging or genetic sequencing tests necessary to get an accurate diagnosis Insurance reimbursement issues for costs related to getting an accurate diagnosis Amount of time required to get tests approved by insurance companies/3rd party payers. http://rarediseases.info.nih.gov/News.aspx http://rarediseases.info.nih.gov/files/UDP-%20Questions%20for%20patient%20focused%20webinar%20Oct-2012.pdf