**Author Listing - Lead/ Submitting Author (we will be communicating with this individual): Name, Institution, City and State where the work was done. Co-authors will be added in a separate section.**
Sabrina Rebello, Amyloidosis Research Consortium, Newton, MA

**Main Body of the Abstract**
Introduction Light chain amyloidosis (AL) is a rare, progressive, multisystem disease caused by a misfolding protein. Patients are benefitting from recent advances in treatment and increased disease awareness; however, their diagnostic journey is often lengthy and challenging. This analysis examined the diagnostic journey of patients recently diagnosed with AL amyloidosis in a cross-sectional study.
Methods In 2022 and 2023, the Amyloidosis Research Consortium conducted online surveys of amyloidosis patients. Data collected included demographic, clinical characteristics, symptoms, and diagnostic journey. Recently diagnosed included patients diagnosed January 2021 – May 2022 in the 2022 survey and patients diagnosed June 2022 – November 2023 in the 2023 survey.
Results Of the 2093 total respondents, 112 (5%) were recently diagnosed with AL amyloidosis (59 and 53 patients in the 2022 and 2023 surveys, respectively). Mean (Standard Deviation [SD]) time from symptom onset to AL amyloidosis diagnosis was 1.7 (4.1) and 1.7 (2.4) years in the 2022 cohort and 2023 cohort, respectively. (Table). The heart and kidney were the most affected organs with 40 (68%) and 33 (62%) of patients reporting heart involvement and 32 (54%) and 34 (64%) reporting kidney involvement in the 2023 and 2023 surveys, respectively. More patients in the 2022 survey waited a month or more to start treatment (21 [38%]) compared to patients in the 2023 survey (12 [24%]).
Conclusion These findings suggest patients are receiving treatment quicker after diagnosis of AL amyloidosis. Further studies are needed to evaluate if this trend is significant.



**Author Listing - Lead/ Submitting Author (we will be communicating with this individual): Name, Institution, City and State where the work was done. Co-authors will be added in a separate section.**
Sabrina Rebello, Amyloidosis Research Consortium, Newton, MA

**Main Body of the Abstract**
**Introduction** Light chain amyloidosis (AL) is a rare, progressive, multisystem disease caused by a misfolding protein. Patients are benefitting from recent advances in treatment and increased disease awareness; however, their diagnostic journey is often lengthy and challenging. This analysis examined the diagnostic journey of patients recently diagnosed with AL amyloidosis in a cross-sectional study.
**Methods** In 2022 and 2023, the Amyloidosis Research Consortium conducted online surveys of amyloidosis patients. Data collected included demographic, clinical characteristics, symptoms, and diagnostic journey. Recently diagnosed included patients diagnosed January 2021 – May 2022 in the 2022 survey and patients diagnosed June 2022 – November 2023 in the 2023 survey.
**Results** Of the 2093 total respondents, 112 (5%) were recently diagnosed with AL amyloidosis (59 and 53 patients in the 2022 and 2023 surveys, respectively). Mean (Standard Deviation [SD]) time from symptom onset to AL amyloidosis diagnosis was 1.7 (4.1) and 1.7 (2.4) years in the 2022 cohort and 2023 cohort, respectively. (Table). The heart and kidney were the most affected organs with 40 (68%) and 33 (62%) of patients reporting heart involvement and 32 (54%) and 34 (64%) reporting kidney involvement in the 2023 and 2023 surveys, respectively. More patients in the 2022 survey waited a month or more to start treatment (21 [38%]) compared to patients in the 2023 survey (12 [24%]).
**Conclusion** These findings suggest patients are receiving treatment quicker after diagnosis of AL amyloidosis. Further studies are needed to evaluate if this trend is significant.



Patient-reported Diagnostic Journey of Patients Recently Diagnosed with Light Chain Amyloidosis: Data from the Amyloidosis Research Consortium’s 2022 and 2023 Amyloidosis Community Surveys PA66 (#326)

We invite you to attend the XIX International Symposium on Amyloidosis to be held in Rochester, MN.

This symposium is organized as a hybrid meeting (with the focus on in-person) held from Sunday, May 26 through Thursday, May 30, 2024.

Together with the ISA Board and members of Mayo Clinic, a very attractive scientific hybrid program is being planned. The program will cover a variety of types of systemic amyloidosis: ATTR (hereditary and wild-type), AL (light-chain), AA and less frequent forms. There will be key lectures, specific symposia including those company sponsored, oral presentations and poster sessions of accepted abstracts.

COURSE DESCRIPTION
This program will provide a comprehensive review of state-of-the-art education in systemic amyloidosis: basic science, pathophysiology, diagnosis, current and emerging treatments. Scientific presentations will include competitive oral and poster abstracts. The rapid evolution of scientific discovery and expanding treatment options has created tremendous interest in the field and this meeting will fill and important gap in educating scientists and clinicians.