Parent Group | PURA Foundation

Support For You And Your Family

If you or your child has PURA syndrome, it’s easy to get caught up in the day-to-day care and routine that surrounds you. But it’s also really important to look after your own wellbeing too.

Talking with other PURA families can be a great way to get support and advice. Together, you can build a strong foundational support network with others who have the experience to understand your journey.

For more information about family support, please reach out to our parent contact Rebecca Nunn or join our online parent group for Australia and New Zealand via the form below.

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When we all work together, anything is possible. #TeamPURA

Join the PURA Foundation Australia and our parent support group.

Parents of PURA patients who live in Australia and New Zealand can join the PURA Foundation Australia and our Parents of Australia and New Zealand Support Group on Facebook.
Complete the form below and one of our Parent Contacts will reach out to you.

PURA parent first name

PURA parent last name

PURA parent email

PURA child's name

Address (City and Country)

PURA child's birthdate

PURA child's diagnosis

PURA syndrome

5q31.3 deletion syndrome including PURA

5q31.3 duplication syndrome including PURA

I would like to receive emails from the PURA Foundation Australia, including emails to join me to the parent group and research updates.

I want to subscribe to the PURA Foundation Australia newsletter and event updates

I agree to the terms & conditions in the data policy

Thanks for submitting! We will email you directly to confirm.

For members of the general public
Keep updated with the Foundation.

To keep updated on general events, research and goals of the PURA Foundation Australia, sign up for our newsletter and education materials.

Newsletters are emailed, providing up to date information. To keep informed and ensure that you never miss an issue please subscribe here

You can also follow us on social media for regular updates, events and opportunities to connect to our community.

To view our data policy click here.

Data Policy

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