Sunrise Sunset – a Column by Jaime Christmas

I’ve just returned from an amyloidosis conference in Baveno, Italy, organized by the Amyloidosis Alliance. This biennial event — called the International ATTR…

Advocacy starts with patients and caregivers. It’s the husband who asks the nurse, “Could the lightheadedness mean something more?” It’s the daughter who brings journal articles…

In my work as an advocate for the New Zealand Amyloidosis Patients Association (NZAPA), I meet many people with ATTR amyloidosis and their…

An automated message from LinkedIn recently reminded me that it’s been five years since I started my role as a patient advocate at the…

It’s been nearly a month since the charity I lead, the New Zealand Amyloidosis Patients Association (NZAPA), held a conference for patients and caregivers. The…

Here in New Zealand, clinicians and advocates are pushing our country’s government to update its genetic editing and modification legislation. Historically, New Zealand…

Through my roles as a caregiver for my late husband, Aubrey, and as an amyloidosis patient advocate, I’ve been transformed. I once assumed that…

It’s another stunning summer day here in New Zealand’s Waikato region. We’ve been blessed all week with clear skies and a warm breeze blowing through the…

December is a month of university graduation here in New Zealand. All the hard work, blood, sweat, and tears conclude in a cacophony of salutations…

According to the Murdoch Children’s Research Institute, there are more than 7,000 rare genetic diseases in the world, mostly affecting children. Additionally, about 300 million…