Our theme for our inaugural conference was ‘Emerging from the Shadows’. It reflected the rising hope of new and emerging treatments for this previously untreatable condition.
Our mission with this conference was share as much awareness and information as possible among the medical profession and wider community.
Our conference is international and its audience included patients, consultants, surgeons, doctors, nurses and other health care providers.
Watch the talks
We hosted expert speakers to discuss important issues such as;
- The need for early diagnosis.
- Importance of speedy access to ATTR specific treatments.
- ATTR T60a and its Donegal history.
- Typical symptoms for ATTR Amyloidosis.
- Learn about new treatments and clinical trials available now.
Watch the documentary
Starring Daniel O’Donnell, conference speakers, Amy.ie Advocates and more — we filmed this short documentary at the conference to help raise awareness of the disease, our expert talks, and to help bring the community together.
The venue was An Chúirt Hotel in Gweedore, in the Gaeltacht (Irish speaking) region of North West Donegal. It’s overlooked by our majestic Errigal, the tallest peak in the county.
Meet the speakers & watch the talks
Prof. Julian Gillmore — Head of National Amyloidosis Centre, UCL London.
“The Dawn of New Treatments” watch talk →
Julian is an internationally recognised expert on Amyloidosis and was involved in all the major ‘gene silencing’ trials related to ATTR amyloidosis. He is presently the lead author of the first trial of in vivo gene editing in humans using CRISPR cas9 technology.
Prof. Mary Reilly — Professor Neurology, University College, London
“ATTR Amyloidosis and Peripheral Neuropathy” watch talk →
Mary is internationally recognised for her work in ATTR Amyloidosis and inherited peripheral neuropathies. She is past President of the Association of British Neurologists and has also published reports on prevalence of hATTR T60A variant gene around Donegal coastline.
Prof. Emer Joyce — Consultant Cardiologist, Mater Hospital, Dublin
“ATTR Amyloidosis and the Heart” watch talk →
Emer specialises in heart failure and cardiac transplantation at the Mater University Hospital Dublin. Emer also has a lot of experience, especially with cardiac amyloidosis with many current ATTR Amyloidosis Irish patients.
Dr Sinéad Hughes — Consultant Cardiologist, Altnagelvin Hospital, Derry
“The History of T60A in North West Donegal” watch talk →
Sinead is a Consultant Cardiologist, Western Health & Social Care Trust, based in Altnagelvin in Derry. Her main areas are imaging, heart failure and amyloidosis.
Prof. Sinéad Murphy — Consultant Neurologist, Tallaght University Hospital, Dublin
“hATTR Amyloidosis and the Autonomic System” watch talk →
Sinéad runs Peripheral Nerve & Neuromuscular Clinics and co-directs the National Ataxia Clinic. Her subspecialty interests include peripheral nerve disorders and inherited neuropathies.
Dr. Mark Coyne — Consultant Haematologist
“Pathways to Genetic Testing” watch talk →
Mark has been involved with many Irish ATTR Amyloidosis patients over the years. Among his many Amyloidosis projects included a medical submission to HSE for recent introduction to Ireland of life saving drug Patisiran.
Prof Aisling Ryan — Consultant Neurologist, University College, Cork
“H90D: The 2nd most common mutation in Ireland” watch talk →
Aisling moved to Germany to undertake a PhD in neuromuscular channelopathies and returned to Ireland to complete her clinical neurology training. She also spent a year at the Centre for Neuromuscular Disease, National Hospital for Neurology and Neurosurgery, Queen Square, London.
Jean-Christophe Fidalgo — President, Amyloidosis Alliance
“The Power of Amyloidosis Patients Groups” watch talk →
Jean-Christophe is President of the Amyloidosis Alliance which covers the majority of Amyloidosis patient support groups and organisations worldwide.
Carlos Heras-Palou — President of UK ATTR Amyloidosis, Patients Association
“Intro to UK ATTR Amyloidosis Patients Association” watch talk →
Carlos is President of the UK ATTR Amyloidosis Patients Association (UKATPA). He is also an orthopaedic surgeon. He was diagnosed with hATTR amyloidosis and involved in the original Patisiran trials. Carlos and UKAPTA work tirelessly on behalf of Amyloidosis patients in the UK.
Sandra Campbell — Director of Northern Ireland Rare Disease Group
“Shining the Torch of Awareness” watch talk →
Sandra is Director of Northern Ireland Rare Diseases Partnership (NIRDP). She is also involved with Foyle & North West Rare Disease Forum which provides support and advocacy for people with rare diseases in the North West.
If you’d like to know more about our Conference please email email@example.com