GeneEQUAL will make genetic health care better for people with learning and intellectual disabilities.
We want to hear from you!
Where we are up to:
- The study has ethics approval to start across NSW.
A committee was formed with:
- Our team
- NSW Ministry of Health
- Doctors
- Researchers
- Advocates and self-advocates with intellectual disabilities
- 12 people have been interviewed by Iva and Julie
- We want to talk to 8 more people
We had an Advisory Workshop in November.
People in the workshop:
- Shared that learning about genetic conditions can be a big shock.
- Thought it was important that counselling to talk about feelings is available
- Mentioned some problems with NDIS
- Said doctors and genetic counsellors need to know how to check in with people
- Suggested that people need help to prepare for seeing a genetic doctor.
- Agreed that genetic research is important.
We will have another Advisory Workshop in February.
Who can join GeneEQUAL?
People who:
- have learning and intellectual disabilities
- live in NSW
- had a genetic test or talked to a genetics team recently
- had a genetic test of talked to a genetics team a long time ago, like when they were a child
Want to have your voice heard?
- Please contact Iva and Julie and they can tell you more!
- Email i.strndova@unsw.edu.au
- Mobile phone: 0426 959 172
“You need to have a group where we can all sit down and talk, and we work out our own problems.
Not have someone else work our problems out, because I can tell you now, we don’t listen to what people think.
It’s what we know, what we’re going through, and how we can deal with it.”