Rare Diseases Q1 2023
Don’t live with the pain and discomfort: how to manage ATTR amyloidosis
It’s important to educate people about ATTR amyloidosis because the symptoms are not always obvious. I’d never heard of amyloidosis until 2020 — I became unwell at work. I initially thought I was having a heart attack. In August 2020, I met with my consultant who informed me of the diagnosis. To determine what type … Continued
New rare disease plan needed to improve Ireland’s rare disease pathways
Government and industry partnership is essential to deliver quicker diagnoses for rare disease patients and better access to innovative treatments. Rare diseases collectively affect around 280,000 people in Ireland but the impact they have on patients, families and society is profound. Of the nearly 7,000 rare diseases, many are severe, chronic and progressive, with only … Continued