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Strategic Plan

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Strategic Objectives

To provide peer support and information to families and individuals who are affected by rare diseases (80% of which are genetic in origin).

Actions to achieve objective

  1. Ongoing maintenance of Contact Register database

  2. Provide telephone, email and internet access to information including appropriate contacts and support services for carers and people who are affected by genetic conditions

  3. Assist and support peer support groups via telephone support, genetic seminars and leadership workshops, resource packs and updated fact sheets.


Measure of objective achievement

  • Phone, email & Contact Register database updated with numbers/trends reported to Board
  • Number of phone calls regarding genetic conditions
  • Number of people attending support group meetings
  • Number of ongoing support groups assisted
  • Number and locality of genetic & carers seminars


To promote information dissemination to the public and service professionals about the unique concerns of carers of people with a genetic condition

Actions to achieve objective

  1. Presentation at Genetic Fellows Orientation

  2. Sibling workshops in Partnership with Genetic Counsellors

  3. Lecture to Masters of Genetic Counselling students

  4. Regular genetic seminars – e.g. Klinefelter syndrome, Triple X, Ehlers Danlos

  5. Quarterly leadership meetings

  6. HGAC, ID Grant, ARC Linkage Grant, Consumer Health Forum committee meetings

  7. Rare Disease Day participation

  8. Distribute quarterly GA Newsletter and promote GA services via the media

  9. Maintain Genetic Alliance Australia Website, Twitter and Facebook

  10. Regular mail-out of GA brochures to relevant health, community and social services/organisations

  11. Provision of information to clients including brochures, newsletters, factsheets, invitations to events


Measure of objective achievement

  • Number and attendance of Sibling Workshops
  • Yearly presentation at Genetic Fellows Orientation
  • Yearly lecture to Master of Genetic Counselling students
  • Number of Leadership Meetings held & attendance number
  • Regular HGAC teleconferences, Consumers Health Forum consultation (e.g. life saving drug program), Board meetings
  • Involement in Intellectual Disability Grant submission (whole genome sequencing research)
  • ARC Linkage Grant – research partnerships
  • Invovlement in Rare Disease Day e.g. seminar, picnic day, advocacy event (varies yearly) 
  • Genetic Alliance Australia Newsletters distributed to members (quarterly)
  • Number hits to Genetic Alliance website, Twitter and Facebook
  • Regular interaction on social media outlets (1-2x per week) 
  • Number and type of media promotions


To provide updated information to families and people who are affected by genetic conditions

Actions to achieve objective

  1. Ongoing maintenance of Contact Register database

  2. Provide telephone, email and internet access to information including appropriate contacts and support services for carers and people who are affected by genetic conditions

  3. Assist and support peer support groups via telephone support, genetic seminars and leadership workshops, resource packs and updated fact sheets.


Measure of objective achievement

  • Phone, email & Contact Register database updated with numbers/trends reported to Board
  • Number of phone calls regarding genetic conditions
  • Number of people attending support group meetings
  • Number of ongoing support groups assisted
  • Number and locality of genetic & carers seminars


To promote information dissemination to the public and service professionals about the unique concerns of carers of people with rare genetic condition

Actions to achieve objective

  1. Organise and run Annual Genetic Disorders Awareness Week; representation at HGSA Annual Conference

  2. Annual Information Day for carriers of BRCA1/2 gene faults and unknown gene faults in a collaborative partnership

  3. Distribute quarterly GA Newsletter and promote GA services via the media

  4. Maintain GA Website and Facebook profile

  5. Regular mail-out of GA brochures to libraries, Social Work Departments, Genetic Services, education centres and other relevant health organisations


Measure of objective achievement

  • Williams Syndrome Picnic Day - attendance number
  • Genetic Disorders Awareness Week - attendance number
  • BRCA1/2 Annual Information Day - attendance number + analyse participant feedback
  • Genetic Alliance Australia Newsletters distributed to members (quarterly) 
  • Number hits to GA website
  • Number and type of media promotions



Call on +61 2 9295 8359 for more information.

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Our mission statement

To facilitate support for those affected directly or indirectly by genetic conditions throughout Australasia.

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C/- Garvan Institute of Medical Research
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Darlinghurst ,  NSW   2010

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