Rosaline Callaghan; Person with lived experience of rare disease and Rare Disease Forum Steering Group member
Rosaline Callaghan is 63, a retired barrister, and living with Hereditary Amyloidosis Thr60Ala. It’s a progressive and ultimately fatal condition in the absence of treatments and until a few years ago, there were none. Rosaline is the first in her family to have the benefit of a gene-silencing treatment which dramatically slows down the progression of this multi-systemic condition.
It originates in a fifteen-mile stretch of coastline in NW Donegal, which has led to it being known throughout the world, where it wandered with the Irish Diaspora, as “Donegal Amy”. Rosaline is the Founder of Amyloidosis Ireland Support Group with their website at www.amy.ie