Why are we asking patients and families to complete this questionnaire?
It is well known that being able to access educational, psychosocial, and financial support as needed, is an important aspect of treatment for anyone living with a long-term illness.
Patients and carers who joined the AAN’s PFAC virtual meeting on world Amyloidosis Day, October 26th last year voiced their concern that they had been offered very little support at diagnosis and throughout their amyloidosis journey.
The AAN through the PFAC is very anxious to address these concerns.
We are therefore inviting you to help us by completing the confidential questionnaire below, which we hope will give us a snapshot of what support services are available for amyloidosis patients across Australia now, how they are being used and what support patients and carers would like to have had access to at diagnosis and throughout their amyloidosis journey.
These questionnaires are the property of the AAN and will not be used by any other organisation.
The information you provide will not be personally identifiable unless your permission is given for further contact.