HNF "Voice of the Patient" Weekend

Washington, DC ~ September 28th & 29th, 2018

College Park Marriott Hotel & Conference Center Hyattsville, Maryland

 

The Hereditary Neuropathy Foundation will be hosting two ground-breaking patient-centered  meetings to capture the “Voice of the Patient” so we can improve and implement protocols, treatments and the development of new therapeutics to meet our Charcot-Marie-Tooth (CMT) patients’ needs.

If you are a health care provider, researcher or industry stakeholder with an interest in improving outcomes for CMT patients, this important two day event should not be missed.

Day 1: Friday, September 28th, 2018: Externally-led Patient-Focused Drug Development (PFDD) Meeting:

The PFDD meeting is an opportunity for patients and families to inform the FDA, drug developers and other key stakeholders, on the true burdens of living with CMT and how patients view the benefits and risks of treatments for CMT.

This groundbreaking meeting will include facilitated panel discussions designed to provide the FDA with perspectives from people with hereditary neuropathies, advocates and caregivers. The day will focus primarily on a range of patient viewpoints on CMT, covering the symptoms and impacts to daily life that are most important to patients and patients’ perspectives on existing and future treatments.

For more about the PFDD meeting, read more here.

Day 2: Saturday, September 29th, 2018: Patient-Centered CMT Behavioral Health Summit

This year’s Summit will be a game-changer experience for those living with CMT! We’ll start the day with research updates, but the real focus of the day is an amazing, interactive empowerment workshop developed specifically for you by a highly-accredited thought leader. You will gain insight from others on the emotional impact CMT is having and why emotional impact is important to patients with CMT. At the end of the Summit, you will have gained the skills to dramatically elevate performance and fulfillment — in all areas of your life.

CMT Summit 2017

Get Involved!

If you would like to get involved with or become a sponsor of this event, please fill out the form below:

THANK YOU TO OUR SPONSORS

Pharnext
Acceleron
Cydan
Flex Pharma
EveryLife Foundation