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Patients and Caregivers are Key Drivers of Diagnosis and Treatment in Rare Diseases

Posted by | 1:11pm on Thursday, November 3, 2011

these patients and caregivers are very motivated to obtain an accurate diagnosis and the best treatment 

boy holding magnifying glassPharmaPhorum asked Siren Interactive to write a series of blog posts about the world of rare diseases. In the six-part series, titled “Rare is different,” we’re showing how working within rare diseases is unlike other pharma markets, particularly in the knowledge and influence wielded by patients and caregivers.

I wrote the third post, “Patient and caregivers are key drivers of diagnosis and treatment in rare diseases.” As referenced in the last post, a typical physician might never encounter a patient with a rare disease over the course of his or her entire career. It’s understandable that most physicians develop expertise to do the greatest good for the largest number of patients. However, these patients and caregivers are very motivated to obtain an accurate diagnosis and the best treatment.

Earlier this year Siren Interactive published Uncommon Challenges; Shared Journeys. The book features 13 stories that provide a window into the lives of caregivers and patients battling rare diseases, revealing how each unique journey is, in fact, a shared journey. In my post I highlight a few excerpts from the book that show how these individuals came to a diagnosis and treatment plan. Let me know what you think in the comment section.

(Image courtesy of surlygirl on Flickr).

About Katie Mihelich

Honored by the Healthcare Businesswomen’s Association as a 2007 Rising Star, Katie heads the account services department. She acts as a trusted advisor for Siren’s clients and has developed strong relationships, some of which have lasted for more than ten years. Her strategic leadership and deep understanding of the pharmaceutical industry have played a key role in the impressive growth of the agency.

View other posts from Katie

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