Our mission is really quite simple. We exist to support, inform, educate, network, promote research, and to advocate for families affected by Angelman syndrome.

We achieve this through:

SUPPORT AND ADVOCACY:
We support families on their diagnostic journey and through all stages of life, connecting with the AS community at a local, state, and national level. We develop and identify quality resources to help families in their day-to-day living.

We advocate with government on matters such as health, NDIS, and quality care, and contribute to Royal Commissions and proposed laws and regulations that impact our AS loved ones and their families.

EDUCATION:
We develop and provide resources to inform and educate AS families, medical and allied health professionals, educational providers, and the general public about Angelman syndrome.

RESEARCH:
We promote medical, therapeutic, and educational research that will benefit families and individuals with Angelman syndrome. We collaborate with the Foundation for Angelman Syndrome Therapeutics (Australia) to keep the community up to date with research and to encourage research in Australia.

FUNDRAISING:
We fundraise to provide support for Angelman syndrome individuals and their families in times of crisis, and to contribute to hosting our biannual conference.

Australian X & Y Spectrum Support (AXYS) help support individuals and families living with X & Y sex chromosome variants in particular; Klinefelter Syndrome/XXY, XYY, XXX, XXYY, XXXY, XXXXY and associated variants.

We are here to increase awareness and to inform the health and education sectors and broader community on what these X and Y sex chromosome variants are and the impact it has on individuals and families and how they can better support, guide and implement appropriate tools and treatment plans. We aim to ensure that everyone living with an X & Y chromosome variant has the opportunity to reach their fullest potential living a happy life with minimal impacts from possible health related issues.

We can offer a wealth of knowledge, advice, guidance and support but it’s important to note that we are not medical professionals. We can help direct you to find the right health care professionals that can give you supportive, knowledgeable and specific advice.

The Charcot Marie Tooth Association Australia Inc. (CMTAA) began as a Support Group in 1988, and was incorporated in 1990 as a registered charity.

The motivation to establish CMTAA Inc. was to meet the need for people with CMT to communicate with each other and provide mutual encouragement.

Over the years we have slowly “evolved” and are now moving forward at an unprecedented pace. In 2018, the National Committee proposed the Association become known as CMT Australia, this change was proposed and accepted at the 2018 National AGM.

Raising Awareness of CMT

We are:

Engaging with persons with CMT, their families, carers and the community. This occurs with contact with the National Office, face to face support gatherings, holding of a National Awareness day, on social media – Facebook and Twitter, publication of our Newsletter three times a year and this website.

Engaging with Medical and Allied Health Professionals in every State to raise their awareness of the condition, and to inform them of strategic options they can assist their patients with to enhance their quality of life.

Using data compiled for the ‘Reducing the Health Burden of Charcot-Marie-Tooth in Australia’ Report to approach Members of Parliament to raise awareness, and of the need for facilities to assist persons with CMT access services they need in one place to enhance their quality of life.

Through our Research Grants, attracting applications to fund research into CMT and engaging with the research community.

Acknowledging and promoting September: International Awareness Month for CMT.

CleftPALS is a volunteer based non-profit organisation of parents and professionals involved in the treatment of the cleft condition.

CleftPALS works most actively to support parents who have young children that have been born with a cleft. CleftPALS can assist with reliable and supportive information if an Ultrasound Detection of a cleft condition has occurred.

https://cleftpalsnsw.org.au/index.php/about/

CleftPALS WA is a voluntary support group consisting of parents of children born with a cleft, adults born with a cleft and professionals who care for children born with cleft conditions.

“Our motto is the sharing helps. We understand the difficulties, heartache and sometimes the shock that comes with having a child with a cleft lip/and or palate and are keen to help you as best we can.”

https://www.cleftpalswa.org.au/

The aim of this group is to provide information, friendship, and support to those who have a family member or friend with Cri du Chat syndrome or other anomaly of chromosome five.

The Cri du Chat Support Group of Australia is a voluntary group that originated in Melbourne.

While an unexpected diagnosis may feel frightening, we would like you to be inspired by the family stories that have been shared.

A message for new families: https://criduchat.org.au/family-support/

Down Syndrome Australia is the national peak organisation for people with Down syndrome in Australia. We provide systemic advocacy on behalf of people with Down syndrome and their families. We work to create change and make sure people understand the experiences of people with Down syndrome and their families.

Services for expectant and new parents
When a baby with Down syndrome is born, parents need accurate and current information about Down syndrome. The Down Syndrome Federation provides support and information to new parents and expecting parents.

Here are some of the services that our state and territory associations offer parents and families.

Family support services
Information and advice about Down syndrome
Information about local support groups
A home visit
Connecting with another parent
New parent packs
Online support groups for parents
Membership with your local association
Workshops and webinars

Our national 1300 number (1300 881 935) will connect you to your local state or territory Down syndrome support organisation. The staff can help you find information, answer your questions and to arrange for you to meet another parent of a child with Down syndrome.

Fabry Australia undertakes many activities, projects and programs to further support its membership. Some of which include;

The Fabry Australia website

The Fabry Australia Social Media page and Fabry Australia Group Page which is under ‘Secret’ setting respecting privacy of those individuals posting about medical and personal Fabry experiences. Social media enables us to interact and communicate with members in a way that traditional websites cannot. We use social media as a means of remaining transparent providing timely information to our members.

Fabry Australia Fabry Patient Meeting – see Events for upcoming meetings throughout Australia

Fabry Australia National Fabry Patient Conference – biannual 2 day conference

Fabry Australia Newsletter (E News) – sign up via the website link or email Fabry Australia directly.

Liaising with Pharmaceutical Industry
Fabry Australia Medical Advisory Committee
Fabry disease Advocacy
Fabry Australia Wellness Retreat
Fabry disease invited speaker meetings
Morning coffee meetings with individuals that are newly diagnosed with Fabry disease
Fabry disease research
Fabry Australia ‘FUNdraising’ activities
Fabry Awareness Month – April

We seek to assist people with genetic conditions and those who support them including support groups, health professionals, non-health professionals, families, and the broader community. Our work focuses on our core pillars:

Education – Ensuring access to information and building awareness
Advocacy – Ensuring key messages are heard by the right people at the right time
Support – Everyone feels supported when they need it

We seek to connect people and families with support through our network.

We facilitate opportunities to share issues and develop collaborative solutions.

We provide direct support for individuals, families and support groups through a range of services including telephone support, referral, connection, listening etc.

The OI Society of Australia was formed in 1977 with the three main aims being to:

1. Offer information and support to individuals and families affected by O.I.
2. Encourage and support research
3. Provide public and professional education and create awareness.

These three aims continue to be our purpose and with the continued improvement in technology particularly electronic media we find that connecting people has become easier and the dissemination of information potentially more comprehensive. Our focus over the coming years will be to focus on raising awareness about OI and ensuring that people living with OI can access and fully participate in both our own activities and in the mainstream activities of society.

We will continue to hold a national conference on OI every two years; to drive and support Wishbone Day; and to promote and support educational events for schools, colleges, universities and medical professionals.   This website seeks to be our link to these and the wider community.