Disease hub
ATTR Amyloidosis
Supporting patients and caregivers with reliable information, research updates, and a community that understands your journey.
About the condition
What is ATTR amyloidosis?
ATTR amyloidosis is a rare disease caused by the buildup of misfolded transthyretin (TTR) protein in the body. These abnormal protein deposits can affect organs and tissues, particularly the nerves and the heart. Because ATTR amyloidosis is rare and its symptoms may overlap with other conditions, diagnosis can sometimes take time. Awareness and early testing are important.Hereditary ATTR
A genetic form caused by changes in the TTR gene. Can affect the nerves, heart, and other organs.
Wild-type ATTR
A non-genetic form that usually develops later in life and often affects the heart.
Common symptoms
Heart symptoms
Nerve problems
Difficulty with mobility
Fatigue
Digestive issues
Symptoms vary by person
Living with ATTR
You are not alone in this.
Many people living with ATTR amyloidosis experience a long and uncertain road before receiving a diagnosis. Symptoms can affect mobility, independence, daily routines, and quality of life, and that experience is different for everyone. Caregivers and family members often carry a significant weight too. RDC is a trusted source of information and updates for everyone affected by ATTR, patients, caregivers, and families alike.People with ATTR amyloidosis can wait 3 to 8 years from their first symptoms before receiving an accurate diagnosis.
Research
Where is research heading?
Research in ATTR amyloidosis is active and evolving. Current focus areas include:New & emerging treatments
Gene silencing therapies and stabilisers are changing the landscape, with several approved and more in development.
Earlier diagnosis
Studies working to identify ATTR sooner, reducing the time to diagnosis and improving outcomes.
Cardiac monitoring
Improving how heart involvement is tracked over time, particularly in wild-type ATTR.
Patient experience
Understanding what living with ATTR is really like, and how care can better reflect that.
Not sure what research participation involves? We’ll walk you through it.
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