Community Center
I live in Toronto, Ontario and have AL amyloidosis with multiple organ involvement.I am currently in a clinical trial and I’m happy to say that I’m doing well. I am…
Nancy Verel, a nurse at the Cleveland Clinic, shares her story about her family’s journey through her husband’s AL amyloidosis diagnosis and treatment. Robert David…
When Pat Jordan, 65, was officially diagnosed with hereditary ATTR (hATTR) amyloidosis in May 2016, her first thought was, “Well, now I know how I’m going to die.”…
Are you caring for an aging parent, spouse, partner, elderly relative, child with an illness or disability, or another person close to you?Caring for Yourself While…
As a family caregiver of a love one with a rare disease, you can feel overwhelmed and hardly know where to start. That’s not surprising. Caregivers in the…
Caring for someone with a rare disease can be an around-the-clock commitment, leaving caregivers with little time to attend to their own needs. Forty percent (40%)…
A recent study looked at available research on the needs of caregivers who look after someone with a rare disease. The journal article identified seven areas that…
I am grateful beyond measure!It was Memorial Day weekend 2023 and our annual family vacation in Myrtle Beach, SC. The perfect time to hit the beach, play in the…
Storytelling is a powerful tool that continuously drives knowledge development and sharing about the patient experience with managing hereditary diseases and…
