2024 Programs
Dedicated to driving advances in the awareness, science, and treatment of amyloid diseases.
Improving Diagnosis
Enhancing the speed and accuracy of diagnosis
- Conference attendance and presentations
- Virtual Grand Rounds in Amyloidosis: A Pilot Program
- Who Missed Your Diagnosis?
(World Amyloidosis Day physician awareness campaign)
Increasing Understanding
Expanding what we know about amyloidosis & patient experiences with the disease
- ARC Community Survey
- ATTR Burden of Disease Study
- Health Equity Study
Accelerating Treatment
Expediting regulatory approval processes & improving patient reimbursement for effective treatments
- Amyloidosis Forum (FDA Partnership)
- Federated Data Analytics
- Determining Clinical Meaningfulness in Endpoints
- Transthyretin Amyloidosis Quality of Life
(ATTR-QOL) Questionnaire
Supporting Patients
Enhancing care & quality of life of patients and caregivers
- Core Patient Programs
- My Amyloidosis Pathfinder (MAP)
- Health Equity: Spanish Translation of Booklets
- Rare Disease Week 2024
NEW Patient Programs & Resources
- Peer to Peer Patient Mentorship Program
- Amyloidosis Academy for Patients
- Fact Sheets and Informational Booklets (as they become available)
