Are you someone who’s been impacted by rare epilepsy? Do you want to advocate for and represent the diverse needs of your community? Would you like the chance to share your experiences and help other families living with complex epilepsy?
Then we want to hear from you.
We’re looking for people with lived experience to help us form the inaugural Rare and Genetic Epilepsy Consumer Advisory Group. As a member, you’ll be a voice for families and represent them at meetings with the key stakeholders.
Your work will help us improve the system, build better resources and create programs that accurately reflect the daily reality of living with these conditions. This is a chance to share your expertise, experience, and opinions to make a real difference in your community.
You could be a parent, guardian, carer, sibling, or grandparent to someone living with rare/complex/genetic epilepsy – we want to hear from everyone impacted by this diagnosis. You’ll be joining us for quarterly meetings over Zoom and will be reimbursed for your time.
Help shape the work we are doing, guide future service delivery and let your voice be heard.
Frequently Asked Questions
- What is a Consumer Advisory Group?
The purpose of this inaugural Consumer Advisory Group is to share your lived experience of a rare and/or genetic epilepsy (Developmental and Epileptic Encephalopathy; DEE). As a member, you’ll be a voice for families and represent them at meetings with key stakeholders.
Your work will help us improve the system, build better resources and create programs that accurately reflect the daily reality of living with genetic epilepsy. This is a chance to share your expertise, experience and opinions and make a real difference in your community.
- Who can participate in the group?
We’re looking for people impacted by a rare or genetic form of epilepsy across Australia. You could be a parent, guardian, carer, sibling or grandparent to someone living with rare and genetic form of epilepsy – we want to hear from everyone impacted by this diagnosis.
- What is the time commitment?
Members of the Group will be required to join us for one meeting of approximately 1 hour quarterly (every three months) via video conferencing. There will also be the opportunity for further contribution, if you’re interested. You’ll be reimbursed for your time.
- How do I apply?
If you’re interested, complete the survey below or contact Giorgina (Project Assistant) at firstname.lastname@example.org. In your email, please answer the following questions:
1. Why are you interested in being a member of the Consumer Advisory Group? For example, do you have experience as an advocate, peer support worker or volunteer? If not, what appeals to you about being involved in healthcare advocacy?
2. What challenges have you faced while caring for your family member impacted by a rare and/or genetic epilepsy?
3. What are the areas you consider top priorities for change to improve outcomes for affected individuals and their families/carers?
This is a joint project between GETA and the Epilepsy Foundation – if you have any experience with either organisation, please let us know in your email.