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Voice of the Patient Weekend: Expanding the Science of Patient Input in Drug Development and Tapping into Personal Potential

by | Sep 25, 2018 | 0 comments

The time for our community to shine is coming as we prepare for the Patient-Focused Drug-Development Meeting on September 28, 2018! Susan Dentzer, editor of Health Affairs Today, has referred to patient engagement as the “blockbuster drug of the 21st century”.

On this monumental day, our patient voices will finally be heard to give the FDA and other stakeholders a deeper understanding of the experience of living with CMT and other Inherited Neuropathies. By integrating our patient perspectives at the meeting, we actively involve patients in their health and healthcare system.

Why Are PFDD Meetings Important?

Decision-makers are increasingly realizing that the voice of the patient is a critical element in understanding how to develop and approve therapies that provide clinically-meaningful benefit to those living with a particular disease. Without patient insights, the FDA’s ability to assess the benefits and risks of a particular therapy, and its ability to provide real benefit to patients, is significantly compromised.

As such, the purpose of this meeting will be to provide the FDA with insights and information from CMT patients, families, and caregivers on the impact that CMT has on their day-to-day lives, including their perspective on the symptoms that are most important. Through this meeting, the FDA also seeks to understand the ways in which patients treat and manage their CMT (symptoms) and the decision factors that they take into account when choosing a treatment.

This feedback will, in turn, inform the FDA regarding the severity of the CMT, along with the benefit-risk balance of treatment options and unmet medical needs. Ultimately, your voices, whether you are panelists, attendees, participants in the webcast and the overall feedback gathered by all who participate, will directly help to inform the decisions made about potential drugs in development and the overall assessment of future therapeutics in CMT.

If you haven’t signed up yet, please do. For those that have, thank you! You can also watch the PFDD meeting LIVE beginning at 8:30 ET.

Patient-Centered CMT Behavioral Health Summit

More good news…through the Hereditary Neuropathy Foundation Patient-Focused Research Initiative, we will be addressing emotional needs of the CMT community with the first ever, Patient-Centered Behavioral CMT Health Summit. The Summit is to be held on Saturday, September 29, 2018, at the College Park Marriott Hotel and Conference Center in Hyattsville, MD. This year’s annual summit will be a life-changing experience for CMT patients and families, with a strong focus on behavioral and emotional health.

“We often hear so much in regards to the physical aspects of disease and disability, but very little on how it impacts our mental well-being, which for many can be more devastating. Our goal with this summit is to provide a curated “CMT Toolbox” that attendees can apply to their daily lives for increased fulfillment and wellness across all avenues,” says Estela Lugo, HNF Medical Outreach Manager.

The day will begin with an interactive empowerment session developed specifically for the CMT community by highlyaccredited thought leader, Lisa McCarthy, co-founder of The Fast Forward Group. Attendees will also learn how surgery outcomes can affect behavioral health from orthopedic surgeon, Glenn B. Pfeffer, MD. Two breakout workshops, moderated by Lainie Ishbia, founder of Trend-Able and Alana Kessler, Registered Dietitian and Holistic Health Coach will dive deeper into improving lifestyle, nutrition, confidence and social interactions.

This single day has the potential to drastically shift the CMT patient perspective on how they approach self-care and wellness, as well as empower them to tap further into their personal potential. Hurry, limited spots left!

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