Coordinated Care Clinics- what do they mean to you?

 Many rare disease patients and families face obstacles in obtaining proper medical care.  They must maneuver through a complex medical system poorly designed to embrace the needs of the patient with complicated disorders. Specialty clinics have been established across the country for more common diseases, while some less known disease-specific communities have been fortunate to find clinics to address their needs.                                                                                                                                                                                                                                                          There are still a great many people dealing with rare and complex disorders that do not have a coordinated clinic to offer services to those who desperately need them. RNE is supporting the Complex Disease Diagnostic & Care Clinic at Mass General Hospital, Boston, which will serve several disease communities who are currently struggling to find proper care. As a first step toward finding appropriate care, this clinic will also benefit the Undiagnosed.                                                                                                                                                                                    Coordinating care for patients with complicated symptoms and resulting needs, as well as offering swifter and more appropriate resources for patients and families, is focus of the CDDC, directed under Amel Karaa, MD. CDDC programs are intended to be built by listening to patient input and by hearing what they would hope to achieve through this clinic. In order to increase CDDC potential, we ask that you take this brief survey.  Thank you!

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* 1.     How important is a coordinated medical care to you?

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* 2.   Do you feel you already have good coordinated care for your medical needs?

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* 3.  If you answered yes to questions #2, please provide your disorders.

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* 4.     Do you obtain medical care in the Boston area?

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* 5.   How important is it to you that someone answers the clinic phone line rather than you leaving a message on machine?

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* 6. What specialties would you like to see at a coordinated clinic? Ex.  gastroenterology, neurology, psychiatry, etc.

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* 7.   What services would you like to see at a coordinated care clinic? Ex. physical therapy, nutritionist, etc.

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* 8. Would you utilize services of a social worker to find appropriate resources related to your condition at a coordinated care clinic?

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* 9. Are you aware that your medical insurance does not truly cover costs of coordinated medical care?

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* 10.  Please briefly tell us your own story about coordinated care experiences and what you believe can improve patient care through a coordinated care clinic.

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