As a national umbrella charity, Genetic Alliance Australia works alongside rare condition organisations and support group leaders to strengthen access to trusted genetics information and support.
When genetics questions are coming up across your community, we can talk with you about what people want to understand and explore an appropriate response. This might involve an online information session, a community Q&A, a briefing for group leaders or a contribution to an existing event.
Depending on the topic, GAA may draw on the knowledge of our Genetic Health Navigator, members of the genetics community or other people with relevant expertise.
Many rare condition organisations are small, volunteer-led and supporting communities with complex or changing information needs. It may not be easy to find the right person to explain a genetics topic clearly or respond to the questions being raised by members.
Part of GAA’s role as an umbrella charity is to help organisations identify these needs, share knowledge and connect with relevant expertise where we can.
Australian rare condition organisations, support groups and community leaders are welcome to contact us. You do not need to have developed a seminar brief or decided on an exact topic. You can simply tell us what your community is asking.
The starting point is not a set presentation. It is what your community wants or needs to better understand.
For a reproductive genetics session, this might include an overview of reproductive carrier screening, prenatal screening and diagnostic testing, or IVF with preimplantation genetic testing.
This is not a complete list. We also want to hear about other genetics questions or information gaps affecting your community.
Before deciding what may be helpful, we will talk with you about:
Where possible, any session or response will be shaped around your community rather than based on a standard presentation.
After talking with you, we may explore options such as:
Where an issue is relevant across more than one community, GAA may explore a shared session or resource with interested organisations.
Most sessions are likely to be held online. Other formats may be considered depending on the request, location, available expertise and GAA’s capacity.
Let us know what people are asking, what has prompted the request and what you hope your community will better understand.
We will talk with you about the audience, topic and any accessibility or cultural considerations. We will then consider whether GAA can assist directly, bring in relevant expertise, connect you with another organisation or explore a shared session with other communities.
We will agree on the purpose, content, presenter, format and approach to participant questions before anything is confirmed.
GAA is a small charity, so what we can offer will depend on the topic, timing, available expertise and our capacity.
Contacting us does not guarantee that we can arrange a session, but it helps us understand the information needs emerging across rare condition communities.
Any session arranged through GAA provides general education and information. It is not a clinical genetics appointment and cannot provide a diagnosis, interpret an individual genetic result, assess someone’s personal genetic chance or recommend a particular medical or reproductive decision.
General questions are welcome, but participants should not be asked to disclose personal genetic results or identifiable health information in a group setting.
GAA is a charity, not a clinical or health service provider. Where someone needs advice about their individual health, genetic result or reproductive options, they should speak with an appropriately qualified healthcare professional.
If someone is unsure where to seek help or what their next step might be, GAA’s Genetic Health Navigator may be able to help them understand and navigate relevant services and sources of support.
If a genetics question is coming up across your organisation or support group, we would like to hear about it.
You do not need to know exactly what type of session, format or presenter is required. Tell us what people are asking and we can explore what may be possible.
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