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CATEGORIES:Lecture or Presentation
DESCRIPTION:Event is FREE but registration is required.\n\nOverview\n\nMedi
 cal systems around the world are at capacity. Patients frequently complain 
 that their doctors spend insufficient time with them to really understand t
 heir ailments. Furthermore\, doctors are hesitant to admit that they do not
  know a patient’s diagnosis. Time constraints and financial pressures push 
 doctors to make quick diagnoses and get the patient out the door. For patie
 nts with rare diseases\, the situation is even more trying. The average del
 ay for a patient to receive a diagnosis is 5 to 7 years\, during which time
  they will have seen an average of over seven different doctors. Often forg
 otten are the humanistic burdens of the diagnostic odyssey. Imagine not bei
 ng able to find the cause of your child’s suffering for years on end. Imagi
 ne the stress\, the pain\, the frustration\, and a growing sense of hopeles
 sness in the wake of that suffering. In addition\, the psychological burden
  for the patient and caregivers is huge\, affecting their emotional and men
 tal well-being\, which in turn impacts their ability to properly care for t
 heir loved one. Add to this the financial burden that can be accrued by a f
 amily going from one health care provider to another seeking answers.\n\nHo
 w best to support patients with a rare disease is ill-defined. Medical team
 s\, especially doctors\, are often insufficiently trained to explain to pat
 ients that they do not have the answers—or even know how to get them. Healt
 h care systems are not equipped to provide the psychological and social sup
 port patients need. Genetic counseling is complex in the setting of undiagn
 osed patients. Layered on this is the complexity of supporting the mental o
 r physical disabilities that many patients with a rare disease must manage\
 , whether they have a diagnosis or not.The humanistic support of patients w
 ith rare diseases and their families needs to improve. In this webinar\, we
 ’ll meet experts who struggle with these issues and can help guide us on ho
 w to do better.\n\nIf you’ve already registered\, please click here to logi
 n to the webinar.
DTEND:20221110T180000Z
DTSTAMP:20260511T034651Z
DTSTART:20221110T170000Z
LOCATION:
SEQUENCE:0
SUMMARY:Kathleen Bogart\, Ph.D. (one of four speakers) - The profoundly per
 sonal side of rare disease: Humanizing the therapeutic journey of patients
UID:tag:localist.com\,2008:EventInstance_41527501598492
URL:https://events.oregonstate.edu/event/dr_kathleen_bogart_-_the_profoundl
 y_personal_side_of_rare_disease_humanizing_the_therapeutic_journey_of_patie
 nts
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