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Event Series Event Series: New Patient Cohort Program

New Patient / Caregiver Cohort Program

February 23, 2023 @ 7:00 pm - 8:30 pm EST


Recently diagnosed? Join us for our four week New Patient Cohort! This program will allow you to…


  • Meet other VHL patients and caregivers and developed a personal support network
  • Learn more about VHL disease from VHL experts
  • Learn about the VHL Surveillance Guidelines and why they are important
  • Learn about the importance of VHL-experienced clinical care and the CCC program
  • Learn about resilience, how to practice self-care and where to find support
  • Learn how to be a better self-advocate and share your story
  • Learn where to find available VHLA and external resources
  • Learn how to get involved with VHLA and contribute to the VHL community


Week 1 (February 23rd) – Welcome and What is VHL?

  • Welcome and introductions
  • VHL 101 and Research Discussion


Week 2 (March 2nd) – Self-Care, Self-Advocacy, and Support

  • What is self-care and why is it important?
  • Dealing with Stress and Anxiety
  • Facing adversity and fostering resilience
  • Being a self-advocate
  • “Elevator Pitch” – Communicating with those around you


Week 3 (March 9th) – VHL Veterans Panel

  • Panel discussion with VHL patients – “Ask the VHL Veterans”


Week 4 (March 16th) – Available Resources and Getting Involved

  • How to find available resources
  • VHLA resources
  • External resources
  • Volunteer opportunities
  • Upcoming Events
  • Feedback



Register Here


February 23, 2023
7:00 pm - 8:30 pm
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