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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…

  Image Video file  - Family Health History Road Trip…

I was diagnosed as a child with a disease called bronchiectasis. This chronic disease eventually caused my AA amyloidosis which affected my kidneys and eventually…

The Story of Ramona RARE DISEASE DAY Living with Autoimmune Neutropenia and AA Amyloidosis On the occasion of RARE DISEASE DAY I'd like to share a few words about…

Morie A. Gertz, MD, chair, General Internal Medicine, Mayo Clinic Comprehensive Cancer Center, discusses the rationale for the phase 3 AFFIRM-AL trial (NCT04973137…

For several years, CeCe was living with mysterious health challenges. After seeing numerous specialists and being misdiagnosed multiple times, CeCe finally found…