About Us

Thank you for contacting the Fragile X Alliance Inc. This is a non-profit organisation whose mission statement is to promote education and research into fragile X syndrome, as well as disseminate information and new findings about fragile X syndrome. The Fragile X Alliance Clinic, in Melbourne, offers families a multidisciplinary specialised assessment and evaluation including medical consultation, hearing, vision, speech, occupational therapy and psychological services for individuals of all ages.

X syndrome is the most common inherited cause known of intellectual disability, developmental delay, learning disabilities and autism spectrum behavioural disorders. Diagnosis is important because it can influence medical and interventional strategies and allow informed decision making by carriers. Diagnosis of the fragile X gene is by DNA blood testing.

The Fragile X Alliance’s main purpose is to disseminate information and new findings about fragile X syndrome. The annual educational membership subscription fee is $44.00. This entitles you to an information brochure on fragile X syndrome, copies of policy statements on diagnostic testing and health surveillance, newsletters and updates about lectures and workshops by local and visiting experts. If you have concerns for your child, family member or someone you work with who has FXS, we encourage you to share this information with your family doctor, teacher or other interested professionals.

In addition, we have other educational supplies and information available for purchase. Information is available regarding conferences, parent contacts, regional resource centres and professionals with expertise in fragile X syndrome.

The Fragile X Alliance Inc provides expert medical and allied health services, in-servicing and presentations for professionals and families These are at reasonable rates and all proceeds are used to fund further educational activities. Please contact us for appointments, information or for any questions you might have.

Jonathan Cohen
President, Fragile X Alliance Inc
Medical Director, Fragile X Alliance Clinic
Senior Lecturer, Department of General Practice, Monash University

STATEMENT OF PURPOSES OF FRAGILE X ALLIANCE INC.

1. To establish and manage or provide a multi-disciplinary clinic or clinics to directly aid, care, treat and otherwise assist persons with Fragile X syndrome through any or all of the following services:-
   1. Diagnosis and assessment;
   2. Counselling (including individual, family, genetic and psychological) of persons with Fragile X syndrome, their family members and their carers;
   3. Speech and language therapy; Educational needs;
   4. Medical and pharmaceutical treatment;
   5. Case management;
   6. Occupational therapy and physiotherapy, assistive technology support and vocational support;
   7. Provision of current informative material from international sources about Fragile X to persons with Fragile X syndrome, their families and their carers; and
   8. Referral of persons with Fragile X syndrome to other organisations or agencies when appropriate.
2. To encourage and promote awareness and education of Fragile X syndrome amongst affected family members and carers, the general public, politicians, the medical profession and the educational profession.
3. To support research into the causes, treatment and cures of Fragile X syndrome.
4. To obtain and support intervention and other programs (including appropriate ongoing medical programs, educational and vocational training) in relation to Fragile X syndrome in Australia.
5. To advise government in relation to the provision of services and funding in relation to Fragile X syndrome in Australia.
6. To provide for the delivery and holding of lectures, meetings, classes, conferences and seminars to promote the ideals and programs of the Association.
7. To establish and maintain a library in Australia of contemporary international findings, research and other information in relation to Fragile X syndrome.
8. To promote acceptance and integration of persons with Fragile X syndrome within the Australian community in order to improve the quality of life for people with Fragile X syndrome.
9. To exercise all or any of the following powers for the purpose of raising money for the above stated purposes, namely:-
   1. The organisation of public appeals for funds by any methods;
   2. The organisation of charitable and other like events;
   3. To sell, let, mortgage or dispose of any of the property or assets of the Association as may be thought expedient;
   4. To purchase, lease or otherwise acquire any real or personal property necessary or convenient for the promotion of the purposes of the Association;
   5. To borrow or raise money for the purposes of the Association on such terms and on such security as may be thought fit;
   6. To invest the moneys of the Association in or upon such investments, securities or property as may be thought fit; and
   7. To do all other things as are incidental or conducive to or in furtherance of the attainment of the above purposes and any one of them.

Provided that the income and property of the Association, however derived, shall only be applied solely towards the promotion of the purposes of the Association as set forth here and no portion thereof shall be paid or transferred, by any means whatsoever, to the members of the Association save and except nothing shall prevent the payment in good faith of proper and reasonable remuneration to any officer or employee of the Association or any member in return for the services rendered, money lent or property leased to the Association.

Note: These purposes may only be amended in accordance with the Rules of the Association.