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