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.
Jonas Wixner, Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden, jonas.wixner@umu.se

Main Body of the Abstract
Background
Hereditary transthyretin (ATTRv) amyloidosis was first described in Sweden in the late 1960’s. Selected patient data has been collected at Umeå University Hospital since the early 1970’s and these data were transferred to a national quality registry, SveATTR, in 2020. This is the first report from SveATTR.
Methods
SveATTR is a longitudinal Swedish web-based quality registry open for TTR mutation carriers and patients with wild-type or hereditary ATTR amyloidosis. The variables included cover basic background information, e.g., genotype and co-morbidities, as well as relevant clinical follow-up measures and data on disease-modifying therapies. Data from all ATTRv amyloidosis patients registered in SveATTR as of Dec 2022 were included in this analysis.
Results
A total of 1055 patients were included, of which 65% were males and 95% carried the V30M (p.V50M) mutation. Median age of onset was 64 (21-91) years and 79% had a late disease onset (>50 years). Of those who had got their amyloid fibrils typed, 42% had type B (full-length fibrils). Eighty-five percent of the patients had peripheral polyneuropathy symptoms at onset, whereas 10% had cardiac symptoms, 8% had visual disturbances, and 6% had gastrointestinal symptoms. A total of 159 patients (15%) had been liver transplanted and 216 (21%) had received a disease-modifying drug. Median survival after onset was 22.2 years for liver transplanted patients but merely 10.9 years for the non-transplanted patients.
Conclusions
SveATTR is an important tool for further characterization of the Swedish ATTRv amyloidosis population, as well as for the follow-up of disease-modifying therapies.

**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.**
Jonas Wixner, Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden, jonas.wixner@umu.se

**Main Body of the Abstract**
**_Background_**
Hereditary transthyretin (ATTRv) amyloidosis was first described in Sweden in the late 1960’s. Selected patient data has been collected at Umeå University Hospital since the early 1970’s and these data were transferred to a national quality registry, SveATTR, in 2020. This is the first report from SveATTR.
**_Methods_**
SveATTR is a longitudinal Swedish web-based quality registry open for _TTR_ mutation carriers and patients with wild-type or hereditary ATTR amyloidosis. The variables included cover basic background information, e.g., genotype and co-morbidities, as well as relevant clinical follow-up measures and data on disease-modifying therapies. Data from all ATTRv amyloidosis patients registered in SveATTR as of Dec 2022 were included in this analysis.
**_Results_**
A total of 1055 patients were included, of which 65% were males and 95% carried the V30M (_p.V50M_) mutation. Median age of onset was 64 (21-91) years and 79% had a late disease onset (>50 years). Of those who had got their amyloid fibrils typed, 42% had type B (full-length fibrils). Eighty-five percent of the patients had peripheral polyneuropathy symptoms at onset, whereas 10% had cardiac symptoms, 8% had visual disturbances, and 6% had gastrointestinal symptoms. A total of 159 patients (15%) had been liver transplanted and 216 (21%) had received a disease-modifying drug. Median survival after onset was 22.2 years for liver transplanted patients but merely 10.9 years for the non-transplanted patients.
**_Conclusions_**
SveATTR is an important tool for further characterization of the Swedish ATTRv amyloidosis population, as well as for the follow-up of disease-modifying therapies.

Fifty years of experience with hereditary transthyretin amyloidosis – first report from the SveATTR registry PC50 (#25)

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.