Share Your Thoughts on a Non-Surgical VHL Treatment
As the potential of non-surgical treatments for VHL develop, it is important to learn your thoughts and concerns. Your input is essential for helping us improve care. Please take and a moment to complete this form.
*Please only submit one poll response per person.
Providing your specific contact information (ie: Name, email, phone number) is optional, but it gives us an opportunity to follow up with you if we have any questions about your experience.
First & Last Name (optional)
Phone Number (optional)
Country of Residence
How has VHL impacted your life?
Significantly impacted my finances
Always having to take off of time from work/school for appointments, surgeries and recoveries
Concern over how many total surgeries I can survive
Mental and emotional health issues
Lost ability to perform the duties of my job
Health insurance concerns: Availability/Coverage
Concern about large number of MRI's, CT, scans and X-Rays
What are the major problems with current treatment of VHL disease?
Inability to predict future manifestations
Would a non-surgical treatment for VHL be beneficial to you?
How would a non-surgical treatment for VHL be beneficial to you?
More confidence knowing I can make long-term plans and accomplish goals without constantly being interrupted by surgeries
Would make going for my annual scans less scary frightening
Not having to always look over my shoulder for my next surgery
Less chronic pain from repeated surgeries and longer recovery times
Basic financial security
If a non-surgical treatment for VHL was available, what inconveniences/side effects would you be willing to accept?
Oral treatment, ie pill or liquid
Minor side effects (Tiredness; Stomach issues; Headaches)
Would you agree to participate in a randomized placebo study of a drug that has been shown to shrink VHL tumors?
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This form was created inside of VHL Alliance.