ARC 2025 Community Survey Results
for Amyloidosis Patients and Caregivers
About this Study
The Amyloidosis Research Consortium (ARC) conducted an online survey of individuals with amyloidosis and their caregivers to collect data and gather information on the experience with diagnosis and treatment of those affected by amyloidosis. With newly available treatments since 2018 and with initiatives to increase disease awareness, there have been rapid changes within the amyloidosis community. ARC conducts this survey each year to see how the experience changes over time.
Over 1000 responses were completed for the 2025 ARC Annual Community Survey. Their responses, summarized below, shed a light into the needs of those living with amyloidosis and the work that still needs to be done to improve their lives as we work towards a cure. They are the reason the team at ARC continues working every day to support patients and their families.
What We Measured
ARC asked amyloidosis patients and their caregivers about the journey to an amyloidosis diagnosis and treatment experience.
What We Found
Results from the 2025 ARC Annual Community Survey
Who participated in this study?
Where are participants located?
1000+Global Participants
89% of participants from North America
11% from other regions
11% from other regions
660+U.S. Participants
9% of participants from CA 8% from FL, 6% from NY, 5% from TX, 5% from MA, 5% from PA, and 62% from 43 other states
Identity
Age Range
Top Organs Affected
Heart
75%
Nervous
System
System
45%
GI System
28%
Kidneys
27%
I am so very thankful that the surgeon who performed my trigger finger release was quite aware of ATTR, recognized the suspicious tissue, had it biopsied and informed me immediately of the suspicion and biopsy findings. I am stage 1 with no other symptoms and could have been unaware for quite a long time before more consequential symptoms became apparent as the condition progressed.
— Wild-Type ATTR Patient
Journey to Diagnosis
Average MDs Seen Before Accurate Diagnosis
Patients Diagnosed Per Year
2016
2017
2018
2019
2020
2021
2022
2023
2024
2025
Most Common Barriers to Diagnosis
Many patients report facing barriers to diagnosis, with some reporting multiple barriers. Below are the top 3 reported barriers from AL, wild-type ATTR, and hereditary ATTR amyloidosis patients.
0%
reported misdiagnosis
0%
reported trouble getting testing
0%
reported trouble getting a referral
AL Amyloidosis
0%
AL patients currently enrolled in a clinical trial
0%
AL patients have had a Stem Cell Transplant
0%
AL patients currently on treatment
Top Organs Affected
Heart
61%
Kidneys
54%
GI System
35%
Nervous
System
System
35%
Top 3 Initial Symptoms
Shortness of Breath
47%
Fatigue
40%
Foamy Urine
40%
69
Average Patient Age
(Total Age Range: 38-89)
69
Average Patient Age
(Total Age Range: 38-89)
AL Patients Diagnosed Per Year
2016
2017
2018
2019
2020
2021
2022
2023
2024
2025
Most Common Barriers to Diagnosis
0%
reported misdiagnosis
0%
reported trouble getting testing
0%
reported trouble finding a specialist
Hereditary ATTR Amyloidosis
0%
Hereditary ATTR patients currently enrolled in a clinical trial
0%
Hereditary ATTR patients currently or previously had genetic counseling
0%
Hereditary ATTR patients currently on treatment
Top Organs Affected
Nervous
System
System
82%
Heart
64%
Soft Tissue
57%
GI System
49%
Top 3 Initial Symptoms
Numbness / Tingling in Hands or Feet
75%
Carpal Tunnel Syndrome
50%
Fatigue
43%
67
Average Patient Age
(Total Age Range: 38-88)
67
Average Patient Age
(Total Age Range: 38-88)
Hereditary ATTR Amyloidosis Patients Diagnosed Per Year
2016
2017
2018
2019
2020
2021
2022
2023
2024
2025
Most Common Barriers to Diagnosis
0%
reported trouble
getting testing
getting testing
0%
reported trouble
getting a referral
getting a referral
0%
reported misdiagnosis
TTR Genetic Mutation (%)
Reason for Genetic Testing (%)
Current Disease Modifying Treatments for Hereditary ATTR Amyloidosis
56%
Amvuttra
(vutrisiran)
(vutrisiran)
33%
Vyndaqel/
Vyndamax
(tafamidis)
Vyndamax
(tafamidis)
15%
Wainua
(eplontersen)
(eplontersen)
8%
Dolobid
(diflunisal)
(diflunisal)
5%
Attruby
(acoramidis)
(acoramidis)
3%
Onpattro
(patisiran)
(patisiran)
13%
None
Wild-Type ATTR Amyloidosis
0%
Wild-Type ATTR patients currently enrolled in a clinical trial
0%
Wild-Type ATTR patients with cardiac (heart) involvement
0%
Wild-Type ATTR patients currently on treatment
Top Organs Affected
Heart
92%
Soft Tissue
50%
Nervous
System
System
40%
GI System
16%
Top 3 Initial Symptoms
Carpal Tunnel Syndrome
71%
Numbness / Tingling in Hands or Feet
48%
Back Pain
45%
77
Average Patient Age
(Total Age Range: 50-96)
77
Average Patient Age
(Total Age Range: 50-96)
Current Treatment (%)
Patients by Gender
Wild-Type ATTR Amyloidosis Patients Diagnosed Per Year
2016
2017
2018
2019
2020
2021
2022
2023
2024
2025
Most Common Barriers to Diagnosis
0%
reported misdiagnosis
0%
reported trouble
getting testing
getting testing
0%
reported trouble
finding a specialist
finding a specialist
Diagnostic Testing Prior to Diagnosis
81%
Genetic
Test
Test
79%
Echocardiogram
75%
Blood
Tests
Tests
73%
PYP, DPD,
or HDMP Scan
or HDMP Scan
53%
Cardiac
MRI
MRI
33%
Urine Test
for Protein
for Protein
Other Types
Top Organs Affected by Type
Heart
Nervous System
GI System
Kidneys
- AA
- Localized
- Hereditary Non-TTR
- ALECT2
Total Patients
Average MDs Seen Before Accurate Diagnosis
Number of Other Type Patients Diagnosed Per Year
