News and events
Amyloidosis UK Joins National Voices
We’re delighted to announce that Amyloidosis UK is now a member of National Voices, the UK’s independent coalition of health and care patient organisations.
We’re looking for new Amyloidosis UK trustees
Help lead the charity that stands with every person affected by amyloidosis.
What is happening with SAP scans in the UK?
Although SAP scans are unavailable in the UK due to a global shortage of medical radioisotopes, this is not a dealbreaker for amyloidosis patient care.
Introducing our collaboration with Patient First Research
We’re delighted to be working with Patient First Research, a UK healthcare research community, to make it easier for our members to take part in…
Amyloidosis UK Patient Day: Glasgow 2026
Our Glasgow Patient Day brought together the local amyloidosis community and empowered people to better manage living with their conditions.
Amyloidosis UK Patient Days 2026
We’re hosting two Patient Days this year in the North of the UK. These are free events for people living with amyloidosis, their families and carers. The…
The Other Side of Heart Failure: A Call for Timely
Amyloidosis UK at Parliament: backing better diagnosis and care for those living with unrecognised heart failure and ATTR-CM.
Team Tett: Out-walking Amyloidosis
John Tett’s family are helping him raise awareness of amyloidosis as he undertakes a fundraising challenge to walk 500 km in 90 days.
Organ Transplant Research Evening
An evening with transplant doctors and academics to hear about their research and have your say on how the work should be done.
Delivering on the NHS commitment to networked amyloidosis care
Networked care has the potential to transform outcomes for people living with amyloidosis and other rare diseases but sustained commitment, collaboration and investment are essential…
Update on our Online Support Group for Cardiac Amyloidosis
Our fifth online cardiac amyloidosis support group welcomed new members, expert input from the National Amyloidosis Centre, and growing community engagement.
The RareCare National Survey
The Consilium Scientific Team are excited to announce the launch of the RareCare National Survey, a key part of their ongoing work to evaluate and improve…
