Strategic Plan
Making the right connections since 1988
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
- Ongoing maintenance of Contact Register database
- Provide telephone, email and internet access to information including appropriate contacts and support services for carers and people who are affected by genetic conditions
- 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
- Presentation at Genetic Fellows Orientation
- Lecture to Masters of Genetic Counselling student
- Regular genetic seminars – e.g. Klinefelter syndrome, Triple X, Ehlers Danlos
- Quarterly leadership meetings
- HGAC, ID Grant, ARC Linkage Grant, Consumer Health Forum committee meetings
- Rare Disease Day participation
- Distribute quarterly GA Newsletter and promote GA services via the media
- Maintain Genetic Alliance Australia Website, Twitter and Facebook
- Regular mail-out of GA brochures to relevant health, community and social services/organisations
- 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)Â
- 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)Â
- Number and type of media promotions
To provide updated information to families and people who are affected by genetic conditions
Actions to achieve objective
- Ongoing maintenance of Contact Register database
- Provide telephone, email and internet access to information including appropriate contacts and support services for carers and people who are affected by genetic conditions
- 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
- Organise and run Annual Genetic Disorders Awareness Week; representation at HGSA Annual Conference
- Distribute quarterly GA Newsletter and promote GA services via the media
- Maintain GA Website and Facebook profile
- Regular mail-out of GA brochures to libraries, Social Work Departments, Genetic Services, education centres and other relevant health organisations
Measure of objective achievement
- Genetic Disorders Awareness Week - attendance number
- Genetic Alliance Australia Newsletters distributed to members (quarterly)Â
- Number hits to GA website
- Number and type of media promotions
Call on +61 2 9295 8359 for more information.
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ABN 83 594 113 193 | ACN 168918625 | Registered Charity CFN 15481
