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* 1. Please indicate your specialization

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* 2. How long have you experienced in treating patients with rare diseases?

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* 3. Please indicate which of the following attributes/ activities are the most important/useful/beneficial for you regarding a medication/medicinal product for the treatment of patients with a rare disease

  1-not important 2-might be important 3-important 4-very important 5-highly critical/extremely important
To receive comprehensive knowledge on product characteristics (structure, function and biological activities)

 
To receive clinical evidence/data from pivotal phase II/III trial (efficacy, safety), which is published in peer-reviewed journal

 
To realize that the company understands the target patients’ needs and provides with data from patients reported outcomes

 
To receive evidence/data from Health Economic Outcome Research about product effectiveness (direct or indirect comparison) versus available treatment options (if any)

 
Access or availability of early access provision for that product (prior to marketing authorization) and registries (pre- and post-approval to monitor the patients)

 
That the pharmaceutical company is demonstrating scientific engagements with respective medical societies to improve research and education in that respective therapeutic area
That knowledge from Advisory Boards with experts in the fields has been collected and implemented into product strategy and product lifecycle

 
That the pharmaceutical company demonstrates their commitment to patients and caregivers, with additional services (not related to product)

 
That multiple communication channels are used to reach out directly to end-consumers/patients (TV, press-newspapers, e-commerce, twitter, facebook, other on-line/social media, etc) to inform about that product and educate about disease.

 
The opportunity to receive information about product at company promotional symposia and/or commercial booth at congresses

 
To receive education about the disease and therapeutic area, supported by company via grant or travel to congress

 
That the pharmaceutical company is engaged in co-operation with patient and care giver groups
Face-to-face meetings, hospital visits of sales representatives from the pharmaceutical company

 
Face-to-face meetings, hospital visits of Medical-Science-Liaison- representatives from the pharmaceutical company

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* 4. How important is it for you that a pharmaceutical company focuses on providing with additional materials and/or services to the patients suffering from rare disease? 

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* 5. What do you believe is the most important support you need from pharmaceutical company now and in the future to successfully treat your patients with RD?

 

a.     What do you believe is the most important support you need from pharmaceutical company now and in the future to successfully treat your patients with RD?

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* 6. How important will be social media for patients with rare diseases and their treatment in the future?

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