Australian Ectodermal Dysplasia Support Group

Become a member

Thank you for your interest in becoming a member.

Joining our membership not only unlocks a world of benefits and opportunities but also allows you to be a driving force for positive change. By becoming a member, you actively support our mission to make a difference in the lives of those in need. Your contributions help us carry out vital initiatives, empower communities, and create a brighter future for all. Plus, as a member, you gain access to exclusive events, resources, and a supportive network of like-minded individuals. Join us today, be part of a transformative journey, and make your membership a powerful force for good. 

Level Price  
Individual $5.00 now.
Membership expires after 1 Year.
Individual - Annual Recurring Payment $5.00 per Year. Select
Family $20.00 now.
Membership expires after 1 Year.
Family - Annual Recurring Payment $20.00 per Year. Select
Professional $50.00 now.
Membership expires after 1 Year.
Professional- Annual Recurring Payment $50.00 per Year. Select

Membership Levels





(Admin use only)



Virtual Meetings




Membership Portal


per year





P discounted









P discounted









P discounted





Defining Membership 

Family Membership consists of a family group (eg. Mum, Dad, 3 children – no limit on number of children).

When children reach the age of 18 a new/separate membership will be required unless the individual is at home and studying in which case the individual can continue as part of the family membership.

Professional & Individual Membership is per individual.

Term of membership

Membership to ozED will be on a yearly basis.

The membership year begins on the date of joining.

Annual Recurring Payment option available to keep your membership perpetually active. Memberships not on Annual Recurring Payment will need to be renewed manually each year. 

What can ozED do for me?

ozED is a support group that bind people from around Australia into a group to share experiences and knowledge

What do I get for my membership?

ozED provides the following support and services to our members:

  • Advocacy and representation at education, medical & other organisations (e.g. energy providers)
  • Lobbying Government Bodies (Local, State & Federal for appropriate funding and support
  • National Camphrence (more than a family camp, more than a conference) – members can attend conference for a significantly discounted rate
  • Quarterly Virtual Meetings
  • Hosting State Based Family Days
  • Newsletters
  • Private Facebook Group
  • Information Webinars with Specialists
  • Webinar Recordings
  • Access to resources (school information packs, professional awareness packs)

But most importantly, and our highest priority, you will be able to talk to other people and/or families that have been through what you are facing and are able to let you know the answers that the books and information just cannot.

Who will do the support?

The most qualified people to support people and families affected by ED are people and families affected by ED.  It is an uncommon disorder that gives us a common bond.  As people contact ozED to become members, they will be put in contact with someone who has similar circumstances and in a close (as possible) locality.  This means that as we grow, networks and community groups will develop.  I envisage that these groups/networks will begin their own informal meetings/outings etc… this is where ozED may be able to assist in providing the venue/insurance etc to help this develop and grow.

Who can join ozED?

We welcome any one who wishes to join.  We understand that ED does not only have an impact on the immediate family, but impacts grandparents, aunts, uncles, friends and colleagues (associate membership available – membership forms.).  We encourage you to involve any of your support networks.  This includes any professional person from your local doctor, paediatrician, and allied health to school, school teachers/aides and sporting clubs etc…  Through their membership we can identify areas of education need and ensure that ED is a part of life, not a restriction on life.

What about isolated or remote people?

In today’s information technological community, distance can only be as far as your computer or telephone.  ozED currently use Facebook and Twitter.  We hold our meetings via zoom. This will enable everyone from Perth to Cairns, Darwin to Hobart to be able to participate.  It may also mean that other guest speakers from around the country/world can also present to our group.

Where does ozED get their money?

At the moment the only money that ozED has is what it will derive through membership.  We certainly will be chasing sponsorship at corporate level and will accept any donations.  We are registered with the Australian Taxation Office as a Deductible Gift Recipient.  So the more members we can get the better off the organisation will be.

Why do I need to join ozED to access member pages?

By becoming a member it helps us fund this not for profit support group thus improving the lives of both the children and carers

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