Services Initiatives

SERVICES INITIATIVES

 

Summary

AMDF is committed to increasing its range of support services available to the mitochondrial disease (mito) community. The foundation encourages feedback from the mito community on the existing patient services. This feedback is used to shape the services that AMDF offers.

Key Feedback

Helpline: There has been overwhelmingly positive feedback about the AMDF Helpline.

 

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

 

AMDF-Info-Days

Mito Information Days: Recognised as a valuable resource, mito information days are currently held in major cities. To make them more accessible to those in regional areas, AMDF has established teleconferences in which we plan to include regular guest speakers, such as clinicians and researchers.

 

AMDF-Resources-&-Communication

Resources and Communication: The quality and quantity of our online resources and communications have 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 members of the mito community are happy with the privacy policy. The AMDF is keen to continue with promotion of the registry, to ensure all members of the mito community are aware of it.

 

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

Header---Support-Network

 

  • Maintain AMDF Facebook group as a virtual support group.
  • Incorporate support sessions into existing Mito Information Days.
  • Establish support groups run via teleconference for community members who live in rural or isolated areas.
  • Establish face-to-face support groups around Australia connecting community members who live in close proximity.
  • Extend the AMDF Support Network to enable more people to connect. (Support Network established October 2015)

 

Header-Advocacy

  • Advocate for members of the mito community to ensure they receive the support they are eligible for.
  • Collaborate with other rare disease not-for-profit organisations to gain greater recognition with the government.
  • Stimulate government funding for medical research through support of the Medical Research Future Fund Action Group.
  • Develop an advocacy program to educate politicians about the challenges faced by mito patients and gain their commitment to help make changes.
  • Campaign for changes in Australian legislation to legalise mitochondrial donation enabling women who carry the genetic mutation to have children free of mito. (Two symposia held in September started the conversation about the technique in Australia.)

 

Header---Education

  • Provide a Parent and Teacher Resource Kit to parents of children affected by mito to share with their child’s school. (Pack created November 2015)
  • Commence a mito education project in primary schools.
  • Establish information sessions via teleconference, incorporating guest speakers covering varying topics.

 

Header---Research

  • Fund research designed to assist patients and carers on a daily basis, for example investigating out of pocket expenses for people and families affected by mito.
  • Collaborate with prominent research institutes around Australia to attract and retain leading scientists and researchers into the field of mitochondrial disease research.
  • Position Australia as a prime location for clinical drug trials and inform those on the AMDF Mitochondrial Disease Patient Registry of relevant studies. (Permanent Mito Registry article added to the eNewsletter to increase awareness within mito community)

 

Header---Resources

  • Create Living with Mito section on the website. (Article on exercise published October 2015)
  • Provide information about the National Disability Insurance Scheme. (Web page created December 2015)
  • Provide information regarding government payments and support services through agencies such as Centrelink.