Disease hubs
Participate in Research

Disease hub

ATTR Amyloidosis

Supporting patients and caregivers with reliable information, research updates, and a community that understands your journey.

Amyloidosis
Rare disease
Heart & nerves
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.
Join the community

Don’t navigate this alone

Stay informed about ATTR amyloidosis research, care developments, and news.

Research updates

Educational resources

Research opportunities



    Please choose what you would like to receive. You can select one or both.

    and

    Ticking the first box signs you up to the ATTR newsletter. The second box allows RDC to contact you directly about research opportunities from approved research partners, separately from the newsletter. Your details are never shared with a partner without your separate consent. You can withdraw consent or unsubscribe at any time. Privacy Policy