It's not too late to join ScienceWebinars for the last ScienceAndLife webinar of the year on RareDiseases: The profoundly personal side of rare disease: Humanizing the therapeutic journey of patients On Thursday, 10 November, 12 p.m. ET Register at
Medical systems around the world are at capacity. Patients frequently complain that their doctors spend insufficient time with them to really understand their 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 patients with rare diseases, the situation is even more trying.
How best to support patients with a rare disease is ill-defined. Medical teams, especially doctors, are often insufficiently trained to explain to patients that they do not have the answers—or even know how to get them. Health care systems are not equipped to provide the psychological and social support patients need. Genetic counseling is complex in the setting of undiagnosed patients.
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