Health News
Rare Diseases Q1 2024
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A supportive community for people living with tuberous sclerosis complex (TSC)
Raising awareness of tuberous sclerosis complex (TSC) and the importance of implementing TSC international recommendations can help those affected. Tuberous sclerosis complex (TSC) is a lifelong disease causing non-cancerous tumours to grow in organs including the brain, kidneys, heart, lungs and skin. There is no cure, but treatments exist. TSC Ireland supports patients and families...
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Choosing compassion: what it takes to support children with disabilities and rare diseases
Leanne Lennon, Home Support Worker at Central Remedial Clinic (CRC), discusses how she finds fulfilment in a rewarding career that offers a healthier worldview and growth. How long have you worked on the Network team? I have worked as a Home Support Worker for the Children’s Disability Network Team for 18 months. As part of...
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Living with a rare disease: why the community voice matters
Join us on Rare Disease Day, February 29, the rarest date, to shine a light on the challenges faced by the rare disease community, and to look at solutions to address the health inequalities they experience. Rare diseases affect up to 400 million people across the world,1 and approximately 300,000 in Ireland.2 These diseases are...
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Gene editing innovations targeting multiple variants for rare diseases
A Cork-based research team is developing groundbreaking gene editing strategies that target multiple variants to tackle rare diseases. At the genetic level, we each have many, small variants in our DNA that make each of us unique. Occasionally, one of these variants disrupts the instructions for making an essential protein in our body. This is...
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Hereditary ATTR amyloidosis: a rare disease with a unique Irish connection
hATTR amyloidosis is a rare, hereditary condition caused by amyloid deposits from abnormal versions of a blood protein called transthyretin (TTR). Imagine a rare disease affecting approximately 50,000 people globally, with at least 130 mutations involving different presentations and prognoses, the third most common of which is linked to a 15-mile Irish coastline in northwest...
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New national strategy will address challenges faced by people living with rare diseases
About 300,000 people living with rare diseases in Ireland continue to have a high level of unmet needs and demand equity of access. Today, the 29th of February and the last day of February, is Rare Disease Day — the international day that celebrates and raises awareness of the millions of people living with rare...
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Why we should start seeing the 1 in 17 affected by a rare disease in Ireland
Elevate awareness of rare diseases in Ireland and across the globe. Learn how early diagnosis and lived experiences can make a difference, and join the movement. Approximately 1 in 17 people are living with a rare disease in Ireland. Increasing awareness of rare diseases is necessary to reduce stigma and isolation, increase understanding and create...
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Elevating specialised rare disease care across Europe
Meeting rare disease challenges needs an EU-wide, collaborative healthcare approach, uniting expertise and resources for comprehensive patient care. Healthcare services for the rare disease patient population require a level of specialisation and expertise that is often unavailable at a local level, demanding collective EU action and integrated approaches across national borders. Connecting rare disease experts...
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Rare disease initiative: recognising and supporting PLWRD globally
Explore the global impact of rare diseases in an interactive initiative showcasing achievements and advocating for 300 million people with a rare disease. Rare diseases, once seen as isolated conditions, now reflect common and complex challenges. Mobilisation of civil society has prompted scientific advancements and improved healthcare emerging policies across countries. While promising for the...