2022 Cure VCP Disease Patient and Care Partner Conference | Jul 22, 9:00 AM CDT – Jul 23, 8:00 PM CDT The Westin St. Louis, 811 Spruce St, St. Louis, MO 63102, USA

Agenda

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  • Welcome and Cure VCP Disease Update - Nathan Peck


  • Genetic Implications, Diagnosis, and Muscle Weakness in VCP Disease - Dr. Gerald Pfeffer


  • Break


  • VCP 101: How VCP works and new technology - Dr. Chris Weihl


  • Our Scientific Agenda: Accelerating Treatments in VCP - Dr. Armelle Pindon


  • Lunch and Roundtable Discussions


  • Clinical Trial Readiness and Natural History: What does this mean for VCP?


  • Unlocking the Power of Your Medical Records - Charlene Fernandez


  • Clinical Endpoints and Nationwide Study Update - Megan Iammarino


  • Using Patient Videos as “Real World Evidence” in Clinical Trials - Amber Sapp


  • Natural History Q&A Panel


  • Break


  • Understanding FTD/ALS: Future possibilities of therapies - Dr. Nupur Ghoshal


  • Expert Panel Discussion: What treatments are available now and how to get the best medical care now.


  • Dinner and Networking

    Westin St. Louis


  • Insurance and Life Planning with VCP Disease - Nathan Peck


  • Patient Panel: How do we talk with our family and friends about VCP?


  • Break


  • Patient Panel: Navigating life’s transitions because of VCP disease.


  • Lunch and Roundtable Discussions


  • Living Well with the Disease: Therapy and more.


  • From Victim to Empowerment: Why share your story? - Allison Peck


  • Night Out At The Train Shed

    The Train Shed