Recent ● Loss ● Dx ● 1st Rodeo?

Blog Post

List taken from "Patients & Family Members" webpage: "For example, maybe you’re...

• freaking out
• a parent with child(ren) both with or without VHL
• travelling a lot for a specialist or hospital
• experiencing a recent diagnosis or someone else is
• experiencing a recent loss
• de novo -1st in your family
• someone with a family history of VHL
• a veteran and been through a lot already - This ain't my first rodeo!
• someone supporting a family member –like a spouse or sibling with VHL
• wondering about family planning or pregnancy
• unaware of others in your province or town
• looking for current disease-related or medical information
• wondering about disability benefits in your province
• adopted
• planning to move or just moved to Canada
• having your first symptoms or diagnosis later in adulthood (e.g. 50-60s)

You may have already seen this and identify with something on this list. It doesn't cover everything - it's just what comes to mind when I think about the people from Facebook, other forums, emails, and phone calls.


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