AXYS Information Seminar

Details

Date & Time 20 May 2017, 10:00 AM - 3:00 PM
Venue Health Education Learning Precinct, Royal Children’s Hospital, Melbourne

Description

Supporting individuals and families affected by X&Y chromosome variations including XXY, XYY and more

• Free entry, $10 donation for catering appreciated. Individuals, parents and medical / health professionals are welcome. Please RSVP to contact@axys.org.au.

Program:

10.00 Registration and coffee

10.15 Welcome: AXYS leaders: Anita, Paul, Sara, Susie

10.30 Specialist streams:

Stream A: Men's group

Chair: Paul B-M, Guest speaker TBA

Adult men and fathers of boys welcome. Health, vocational and social challenges.

Stream B: XXY, XYY Parents group

Chair: Anita. Guest speaker Dr

Michele O'Connell, paediatric endocrinologist.

Treatment schedule for XXY and XYY;testosterone and latest research.

Q&A. 

Stream C: Trisomy X girls and women

Stream TBC depending on RSVPs.

Current issues, challenges and identifying information gaps

11.25: Chloe Hanna, Clinical Coordinator, RCH

11.30 Coffee

11.50 What do you want from your AXYS? - Positioning - Sara

Breakout groups:

Group A: Advocacy. Lead by Sara. Promoting information about X&Y; defending our rights; sharing our knowledge

Group B: Education. Lead by Susie. What are the challenges our children face and how do we help them?

Group C: Prenatal diagnosis and babies. Lead by Anita. Supporting the families in the early years - your stories

Group D: Men's issues. Lead by Paul. The future: how can we support positive outcomes; engagement with the wider community including public representation, messaging around KS, locating undiagnosed men

1.00 Lunch - Lunch is provided. $10 donation appreciated

1.45 Formal incorporation of the AXYS entity

We welcome everyone to join us for the formalisation of the AXYS entity. Details about AXYS's legal structure will be made available closer to the date.

2.30 Wrap up and staying in touch

3.00 End