Services Initiatives

 

Summary

AMDF is committed to increasing its range of support services available to the mitochondrial disease (mito) community. In 2015 we conducted a Services Survey to gather feedback on the existing patient services and to find out what more patients and their families need.

Key Feedback

Helpline: There was an overwhelmingly positive response about the AMDF Helpline. The service was lauded and there was consensus about its value.

 

Support Groups: Many respondents indicated a desire for personal contact with other patients or carers. AMDF is developing a number of support group options – check out the recommendations below.

 

AMDF-Info-Days

Mito Information Days: Recognised as a valuable resource, they are currently held in major cities. To make them more accessible to those in regional areas, AMDF aims to establish teleconferences with guest speakers, including clinicians and researchers.

 

AMDF-Resources-&-Communication

Resources and Communication: The quality and quantity of online resources and communications received positive feedback. More web-based resources are being developed, some of which are detailed below.

 

AMDF-Patient-Registry

Mitochondrial Disease Patient Registry: The registration process is reportedly simple and respondents are happy with the privacy policy. Promotion of the registry should increase, as many were unaware of it.

 

Recommendations

In response to the survey and furthering its commitment to supporting people affected by mito, AMDF has developed the following initiatives.

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