The Mito Foundation SERVICES SURVEY


You asked, we listened

Thank you to everyone who took the time to provide feedback to the Mito Foundation as part of the Services Survey. Results from the survey will inform the development of the Mito Foundation’s 2017/18 strategic plan.

What does the mito community need?

Mito community members ranked the top three support services that are more important to them (1 being the most important). Access to health professionals who understand mito was the most important service to the mito community, followed by peer suppor and support in accessing home help.

Survey respondents provided positive feedback about the Mito Foundation’s peer support programme, Mito Connect, which includes Mito Connect Calls, Support Groups and the The Mito Foundation Support Network. Most respondents (77%) would recommend Mito Connect to others with mito.

“Really good new initiatives bringing more support to those affected by mito. Keep up the good work!”

– Adult with a family member affected by mito

How is the Mito Foundation building on its services to address the needs of the mito community?

New initiatives

      • Introduce a clinical fellowship programme to improve specialist medical care
      • Facilitate the establishment of clinical standards of care for mito patients in Australia
      • Launch a Youth Ambassador Programme to help the Mito Foundation improve its support for young people


Expanding existing services

        • The Mito Foundation formalised the Mito Professionals Directory this year, and will continue to engage with health professionals to expand the directory
        • Increase the number of Mito Connect Calls with guest speakers which will be recorded (Listen to our first recorded Mito Connect Call about exercise and mitochondrial disease)
        • Make the Facebook Group a closed group to improve privacy, and encourage conversation
        • Develop a site map and search function for the Mito Foundation website to make it easier to find information
        • Continue to develop fact sheets about mito and living with mito. Click here to access the Mito Foundation’s fact sheets
        • Continue to provide travel grants to help those experiencing financial hardship who don’t live in capital cities attend Mito Information Days


The Mito Foundation is looking forward implementing its new initiatives and continuing to support the mito community over the coming financial year.

Click here for the full report.

Missed out on having your say? Contact our friendly services staff or your state Mito Community Advisory Panel representative to provide your feedback and suggestions.