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Contact other people affected by a genetic condition

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Genetic Alliance will post requests for contact and letters from people searching for families with similar experiences, from those seeking or contributing specific information as well as other resource information.

Anyone who wishes to reply to a request should write directly to the individual or group concerned where an address is provided. The office may be contacted for the information to be passed on in the case of anonymous requests. Privacy and anonymity will be ensured if requested.

While GA Australia aims to facilitate contacts between families it is unable to assess the suitability of these in individual cases.

It should be remembered that a shared genetic condition does not necessarily mean an equally shared value system between families. Different degrees of acceptance and different mechanisms for coping will be encountered and a non-judgemental approach is recommended in establishing contact.

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Contact Corner
Tel: +61 2 9295 8359
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Latest contact requests
Metaphyseal Chondrodysplasia of the Schmid type

A lady is seeking contact with anyone with the same condition/diagnosis. Please contact GA if you know of anyone

Melkersson–Rosenthall syndrome

Adult looking for conact with anyone with the same condition. Please contact GA for more info

Fanconi Bickle Syndrome

Parents of 3y/o child with FBS looking for contact

Cerebrocostomandibular syndrome

If you or anyone you know has this condition, please contact Genetic Alliance Australia

Hexokinase Deficiency

There is a family living in Spain with a 2 yr old boy who are looking for any families around the world living with Hexokinase Deficiency. Please contact GA if you have any contact leads. 

Wiedemann-Rautenstrauch Syndrome

We have a little girl and her parents seeking contact - Please contacr Dianne on 02 9295 8359 or email

Denys-Drash Syndrome

Parent to Parent New Zealand are seeking support for the family of a 9 year old girl with Denys-Drash Syndrome. She had a renal transplant at age 21 months, and this continues to function well. Her mum would love to have contact with any families with children with this rare condition. 

Wolfram Syndrome

We have received an enquiry from Victoria from a man who would like to get in contact with anyone living with Wolfram Syndrome. If you would like to get in contact as well, please contact the Genetic Support Network of Victoria on (03) 8341 6315.

Giant Axonal Neuropathy

A mother of a child with Giant axonal neuropathy would like contact with other families. Looking for new patients, all over the world, and if possible, for collaboration, co-operation, information exchange and/or help in any way (

5Q14.3 micro deletion syndrome

A mum with a girl aged 1 who has just been diagnosed with 5Q14.3 micro deletion syndrome and has been told that she is probably the 'only baby in Australia' with this condition - looking to get in contact with another family who may have this condition.

Multiple Hereditary Exotosis

This family has a son who is 11 years old would be delighted to speak with another parent who has a child of this condition

Wagr Syndrome / 11p

This family of a daughter who is 8 years would welcome the opportunity to speak with another family / parent who has a child with this exact condition.

Aicardi-Goutieres Syndrome

The mother of an 18 month old daughter would like to talk to another parent around the same age or a little bit older who has a child with this diagnosis.

Left Ventricular Noncompaction (LVNC)

We have had a support request for a family with a 14 year old son with Left Ventricular Noncompaction (LVNC). He has the isolated type, which only affects the left ventricle. Our family would like to make contact with other families with this condition for support and information.

Ceroide Neuronale Phases 1

Enquiry from Orphanet – looking to find others with Ceroide Neuronale Phases 1.  Contact GA Australia on +61 2 9295 8359, or by email

Spinocerebella Ataxia (SCA) Type III

Individual seeking contact with others in the area of Cabramatta, or greater Sydney NSW, who are also living with SCA.

List of conditions for which people are
seeking to find others with the same or similar condition
  • Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay
  • Brown Vialetto Van Laere Syndrome / Fazio Londe
  • Buschke Ollendorf Syndrome
  • Cartilage-Hair Hypoplasia
  • Chromosome 9 (breakpoints p24 and q32)
  • Familial amyloidosis
  • Hypochondroplasia
  • Idiopathic CD4 lymphocytopenia (ICL)
  • Lupus & CVID (Immunodeficiency)
  • Myelmilacia cervical disc disease spinal cord
  • Odontohypophosphatasia
  • Pentasomy X (xxxxx 46 xx add x qter)
  • Worster-Drought Syndrome

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To facilitate support for those affected directly or indirectly by genetic conditions throughout Australasia.

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