Tuesday, October 16, 2012

Learn, Be Tested, and get the Help you Need. A Must Read.


The APF is part of a committee which helps address the needs of the undiagnosed. Please take note of the following webinar for
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
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:
Inability 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:
Numbers of times have traveled out of town to be seen by a doctor when trying to get an accurate diagnosis
Numbers 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

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