Rare Diseases Q1 2023
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Providing children with cerebral palsy the highest level of intervention and care
Rare Diseases Q1 2023
A global community demands visibility for people with a rare disease
Rare Diseases Q1 2023
Celebrating rare disease day 2023 by shining a light on ‘rare’
Rare Diseases Q1 2023
Increasing recognition of ATTR cardiac amyloidosis can improve outcomes
Rare Diseases Q1 2023
Gene-silencing drugs are among the innovative treatments for stiff heart
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

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New rare disease plan needed to improve Ireland’s rare disease pathways

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Empowering rare disease communities and pioneers to strengthen research

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Changing the narrative for people living with a rare disease

Rare Diseases Q1 2023
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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
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Hereditary ATTR amyloidosis — a rare disease with a unique Irish connection
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Recognising hereditary ATTR amyloidosis early can improve your quality of life
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An evolving story: improving care for hereditary ATTR amyloidosis
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Empowering rare disease communities and pioneers to strengthen research
Rare Diseases Q1 2023
HSE struggling to meet the needs of rare disease patients