HNF Patient-Centered CMT/HNPP Pain Summit

Friday, November 3, 2017 ~ Cambridge, MA

On Friday, November 3, 2017, in Cambridge, MA, the Hereditary Neuropathy Foundation (HNF) hosted its Annual Patient-Centered Summit for CMT/HNPP and the focus was on pain.

HNF recognizes the importance of meaningful participation of patients and caregivers to engage research related to pain. Participation in the HNF Patient-Centered CMT/HNPP Pain Summit helped patients to better describe and identify their pain and therapeutic approaches.

But, what do we mean by the term “Patient-Centered”?

“Patient-Centered” refers to the meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders TOGETHER in a summit format.

This includes topic selection, panelist participation, audience engagement during Q&A sessions, and all the wonderful conversations in between speaker sessions and at the evening reception.

Below are some of the topics addressed at the Patient-Centered CMT/HNPP Pain Summit:

  • Chronic pain and the importance of social networks.
  • Scientific overview of types of pain and pain mechanisms involved.
  • Assessment of current CMT/HNPP pain management options and discussion of available pain therapies for treatment and coping.
  • Partnering with your HCPs’ to ask for help with pain management.
  • Communicating with loved ones about your pain.  

HNF believes that bringing all groups TOGETHER can influence research to be more patient centered, useful, trustworthy, and ultimately lead to lifestyle guidelines and treatments for CMT/HNPP, making a difference in your life TODAY!