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August 2018 Newsletter: Community Industry Feedback

August 2018

Community Industry Feedback

Pharmaceutical companies are limited in how much they can interact with patients/families they therefore rely on a national patient group, like the NNPDF, and work with us to understand issues that are important to our community. As a reminder, we have developed a community communication system so that NNPDF would have a way to give feedback in a collective manner. This mechanism for coalescing family and patient feedback is fully supported by all of the pharmaceutical companies currently engaged in the trials. If you haven’t already, we invite you to provide feedback relevant to our industry partners. To learn more about this program, please follow the link below.


Missy Ward, NNPDF Board Secretary, has initially volunteered to take your email feedback with the header “Community Industry Feedback”. You can reach Missy at You may also send her your phone number if you are more comfortable providing feedback over the phone. Please allow 1-3 business days for response.