Exploring real-world experiences to guide the development of personalised medicines for individuals with rare genetic conditions

Ref: MUR20665 Date: 9 April 2025, 6:00 pm - 8:00 pmLocation: Murdoch University: 90 South St, Murdoch - Boola Katitjin

Researchers from The Molecular Therapy Laboratory at Murdoch University would like to hear from people with a lived experience of a rare genetic condition. To hear about your experiences and knowledge in navigating treatment options, as well as your interest in participating in the development of personalised medicines. The information gathered will guide the development of educational resources, and support families in understanding the benefits and limitations of emerging personalised medicines. The insights we gather will also inform the direction of our research.

Experience required of attendees:

People with a rare genetic condition or those who care for someone with a rare genetic condition.

Prior to the start of the Community Conversation, a tour of the Personalised Medicine Centre laboratory is offered to any attendees who are interested.

A $70 honorarium (gift card) is offered to attendees and light refreshments will be provided.

Web form to create Applications

Submitting this form will create Applications

Salutation:

First Name: *

Last Name: *

Home Phone:

Mobile Phone Number: *

Email Address: *

Postcode: *

My gender is:

Age Range:

Ethnicity (Please select):

If other, please specify:

I identify as Aboriginal and / or Torres Strait Islander:

I am a: (you can select more than one): *

Lived experience description - What experience do you have to inform the project?: *

Access or other requirements:

If you answered other, please specify:

Dietary Requirements:

Subscribe to Newsletter:

Save Details

Note: By checking this box, you agree to allow us to save your details to a cookie on your device. Your information will not be saved to our servers and will only be used to assist in pre-populating your details on other registration forms. You can clear your saved details by removing this cookie through your browser settings.