Featured photo: Rosaline Callaghan and James Green of ATTR Amyloidosis All Ireland Support Group at the 2022 amyloidosis conference. Photo: Clive Wasson.
A major conference on Amyloidosis will bring a global audience to Derry next month to delve into the rare condition.
The event, taking place from 13-15th of June, received significant interest from healthcare professionals, the patient community, caregivers and families, with some attendees travelling from England, Scotland, the US and Canada to learn more about the ‘Donegal variant’ of the condition.
Amyloidosis is a rare condition caused by deposits of abnormal protein, amyloid, in tissues and organs throughout the body.
A hereditary form of this condition, often called ‘Donegal Amy’, is of particular concern in the North West, with an estimated one per cent of the Donegal population carrying the T60A gene mutation.
‘Donegal Amy’ and other forms of Amyloidosis will be in focus at the Amyloidosis Ireland conference at the Ebrington Hotel, Derry.
This is the second event of its kind to take place in the north west, building on from the first held in Gweedore in 2022, entitled ‘Emerging from the Shadows’.
With the 2025 theme being ‘Moving Forward’, around 180 attendees each day are expected to benefit from shared insights into the latest advancements in treatments, diagnosis, and research.
James Green from Burt, a co-founder of the ATTR Amyloidosis All Ireland Support Group, says it will be a valuable weekend of learning and sharing, with sessions ranging from medical to holistic approaches.
“Back in 2022, the landscape was pretty bleak. Now we have a number of treatments and drugs approved, and more will be available for patients in the next 12 months. Trials are coming online soon to see if drugs can delay the onset of symptoms in young patients, and that is really where you want to be,” he said.
This year’s conference broadens into talks on Wild-Type amyloidosis and AL amyloidosis, featuring valuable contributions from both international experts and key support networks.
Those who haven’t got a ticket for the conference can join a waiting list on amy.ie, while sessions will be recorded and are expected to be published online by the end of the summer.
James was diagnosed with Hereditary Amyloidosis five years ago. In 2023, he became one of three patients in the world to take part in Phase 1 of a genome editing therapy trial. Since then, his test results have shown no progression of the condition.
James stresses the importance of early detection and testing, as the Donegal variant of ATTR Amyloidosis is passed down through families linked with 25kms of the northwest coast of Donegal.
Due to the prevalence in the north west, James says it’s very much on the radar of medics in Donegal.
“It’s absolutely crucial that people get diagnosed,” he said. “If it’s the hereditary type, which is diagnosed through genetic testing, it’s important because it can be very much silent, but can affect the heart.
“We are fortunate that in Donegal, if you present with heart failure symptoms, you can be sent for the tests to see if it’s amyloid. If it is amyloid, they can treat it, rather than just treating it with heart failure drugs or angina drugs, for example.
“We just need the families to follow through on the testing to either rule it in or rule it out.
“Thankfully, now we’re talking more about the word amyloid, the awareness is rising and new things are happening all of the time, but we are still pushing for funding to be made available to fully implement a model of care put in place by the HSE.”
To find out more about the conference and amyloidosis, visit Amy.ie or follow the Facebook page: www.facebook.com/AmyloidosisIreland
A help and support group is available to join at https://www.facebook.com/groups/amyloidosisirelandgroup
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