Table 3.

The patient’s perspective: what’s more important.

THE PATIENT’S PERSPECTIVE: SUMMARY KEY POINTS
Pre-Diagnosis phase
To have an early and accurate diagnosis!
What’s necessary? To increase awareness of the disease
Public campaigns (directed to the general population)                 Sensibilization of media                 Collaborative work: Amyloidosis support groups for patients, National Cardiology                 Societies, industry (sponsors)
Disseminate the diagnostic algorithms & Consensus documents and existing recommendations
Diagnosis and post-diagnosis phases
To have the facility of genetic testing
To get from his/her doctor full information about the disease (patients & family, and caregivers)
To be followed in centres with experience in managing amyloidosis/Excellence centres (Ecs)*
Straight relationship between Ecs and the physician’s doctor in the community
To get full information about treatment and prognosis, and discussion with the patient about its expectations

* Should include genetic counseling in case of hereditary transthyretin amyloidosis.