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Registration

Day #1

Friday, June 7, 2024

Breakfast 

Keynote  

Panel Discussion: CMT Biobank & Biomarkers for CMT Therapy Development

Patient Breakout Sessions & Feedback Sharing  

Break 

Panel Discussion: Innovating Digital Endpoints with Wearable Technology & Live Demo 

CMT Lounges Open: In-Person Support, Resources & Socializing!

Surgical Consults - Dr. Glenn Pfeffer (by Appt.)
CMT Social - Meet & Greet w/ Vendor Tables 
CMT Kids & Teens -  Meet & Greet w/ Resources
CMT Biobank - Donate Blood
CMT Genie - Genetic Testing Support 
CMT GRIN - Registration & Survey Support 

Lunch  

Panel Discussion: Revolutionizing Clinical Trials with Video - If a Picture is Worth a Thousand Words, a Video is Worth a Million

Patient Video Breakout Session & Feedback Sharing 

CMT Lounges Open: In-Person Support, Resources & Socializing!

Surgical Consults - Dr. Glenn Pfeffer (By appointment)
CMT Social - Meet & Greet w/ Vendor Tables 
CMT Kids & Teens -  Meet & Greet w/Resources
CMT Biobank - Register & Donate Blood
CMT Genie - Genetic Testing Support 
CMT GRIN - Registration & Survey Support

Presentation: New Techniques in Foot Corrective Surgeries for CMT, Glenn Pfeffer, MD 

Workshop: Managing Mental Health & CMT 

Panel Discussion: What's blocking CMT Clinical Trials & Investments? 

Closing Remarks, Q&A

Day #2

Saturday, June 8, 2023

Breakfast 

Presentation: Turning Symptoms into Science

Interactive Breakout Session

Presentation: Repurposing Drugs for CMT

Patient Breakout Session

CMT Lounges Open: In-Person Support, Resources & Socializing!

Surgical Consults - Dr. Glenn Pfeffer (by Appt.)
CMT Social - Meet & Greet w/ Vendor Tables 
CMT Kids & Teens -  Meet & Greet w/ Resources
CMT Biobank - Register & Donate Blood
CMT Genie - Genetic Testing Support 
CMT GRIN - Registration & Survey Support 

Lunch 

Presentation: What Does it Take? A Fighter Mom's Journey from Kitchen Table to Injection!

Presentation: What's Next for Gene Therapies in CMT? 

For Industry & Researchers Only: Surrogate Biomarkers
For Patients & Caregivers: What Does it Take to Participate in Future CMT Clinical Trials? 

CMT Lounges Open: In-Person Support, Resources & Socializing!

Surgical Consults - Dr. Glenn Pfeffer (By appointment)
CMT Social - Meet & Greet w/ Vendor Tables 
CMT Kids & Teens -  Meet & Greet w/ Resources
CMT Biobank - Register & Donate Blood
CMT Genie - Genetic Testing Support 
CMT GRIN - Registration & Survey Support 

Presentation: Overview of Upcoming Pipeline & Clinical Trials w/ Q&A  

Closing Remarks

HNF Cocktail & Dinner Party

Hotel Information 

HNF has blocked a limited number of discounted rooms for our 2024 summit at the Loews Coronado Bay Resort. 

 

 View & book hotel rooms

View Hotel


As NEW clinical trials emerge for CMT, the importance of optimizing measures, endpoints and the participant experience has never been more urgent! HNF is committed to derisking upcoming trials by bridging the gap between clinical trial study teams and patient perspectives and experiences.


This impact-driven summit is a chance for all patients, caregivers, clinicians, industry, and regulatory to connect with one another to exchange ideas, and engage in open discussions about the obstacles we face in designing and conducting CMT clinical trials. As HNF focuses on accelerating access to critical research data and specimens, this summit will also include on-site CMT Biobank collection.


Our aim is to create an all-in-one event for CMT Clinical Trial readiness with patients at the heart and center!

 

What to expect:

  • Share your lived experience and patient/caregiver perspective during clinical trial design brainstorming sessions with industry partners currently planning human trials

  • Donate blood/urine samples to the CMT Biobank for expedited access to researchers currently working on CMT treatments

  • Connect and socialize with other individuals living with CMT

  • Learn what it takes to be part of a CMT clinical trial

  • And much more - coming soon

Onsite CMT Research activities:

HNF will maximize CMT data collection, including collecting specimens for our CMT Biobank and participating in HNF's Global Registry for Inherited Neuropathies (GRIN).

What is the CMT Biobank?

HNF is excited to announce that we are continuing to collect CMT specimens to support therapy development. All CMT patient subtypes are welcome to participate!  There are still gaps in understanding the natural history of the disease correlation of genotype / phenotype, easy access to samples and data sharing to support translational research, and the validation of drug candidates and biomarkers for CMT.


**You will have a scheduled time during the summit for a phlebotomist to take your samples.

Learning Objectives:

  • Come together to share common ideas and open dialogue about the challenges we need to overcome so that we can work together and amplify the CMT patient voice and plan successful clinical trials.

  • Discover valuable insights into the patient's experiences, challenges, and perspectives in navigating clinical trials, contributing to shaping future progress.

  • Bridge the gap between clinical trial study teams and patient perspectives and experiences.

#FacesofCMT will offer a unique opportunity to connect with patients or caregivers-some of whom have actively participated in clinical trials-in 1:1 meetings. Attendees can sign up on-site to meet with the participating patient advocates.

Supporting

Hereditary Neuropathy Foundation
https://www.hnf-cure.org

Lowes Coronado Bay Resort

4000 Coronado Bay Rd, Coronado, CA 92118, USA

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