About us | Amyloidosis Ireland

Amyloidosis Ireland team and community advocates

What we do

Raise awareness of amyloidosis across Ireland.
Advocate for speedy diagnosis and access to the best treatments available.
Offer support and connection for patients, families and caregivers.

When the group was founded in 2020 there were no treatments available in Ireland. It was a very bleak and gloomy time for sufferers of amyloidosis.

We set up a Facebook support group which now has 1000+ members. Our initial purpose was to be there for people facing a diagnosis, and to comfort them in knowing they were not alone — like we and others had been in the past.

Since then, we have helped campaign for and have had the joy of witnessing new drugs being made available for the treatment of ATTR amyloidosis in Ireland. Fortunately, there is hope now, where once there had been none.

One of our greatest achievements to date was to host ‘Emerging from the Shadows’ — the historic, first of its kind, conference on amyloidosis in Ireland. It was a resounding success, bringing medical professionals, patients and advocates together from around the world.

The horizon is looking a lot brighter for patients in Ireland now. We hope to continue raising awareness of this disease that can lurk within unsuspecting families.

From the bottom of our hearts, thank you to everyone who has helped us so far. We look forward to a brighter future.

— Amyloidosis Ireland team

Join us on Facebook

We have hundreds of community members that lend their time, effort and hearts to our mission. It’s a great way to stay in touch with patients and families, friends of Amyloidosis Ireland.