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This is the page where you can meet our very newest support groups - some so new that they are still in the founding stages. Thinking of starting a support group? Email Catherine to get your contact details listed here, or contact Leah to find out how to get started - or visit our Information For Support Groups page for some handy information and hints.

Connecting families
Brand new support groups

Connecting families

AARSKOG Group

Pauline coordinates a network of individuals and families affected by AARSKOG. She invites anyone affected by AARSKOG (and their families) to contact her for information and peer support. Pauline can be contacted by phone on 0419 582 149.

Atrichia

Atrichia is a rare genetic disorder characterized by loss of hair, sensitivity to light and a skin disorder. Rhonda has a 6 year old son with this condition and is hoping to contact other families affected by or by a condition that has similar attributes. Please contact Rhonda via email to giltil@bigpond.net.au

Coffin Siris Syndrome

A Melbourne family with a 4 year old daughter are seeking contact with others affected by Coffin Siris syndrome. For initial enquiries please contact Dr Alison Yeung, Clinical Genetics Fellow.

Cogan's Congenital Ocular Apraxia

Nadine is seeking contact with other families affected by this genetic condition. Nadine lives in Victoria and has a 12 month old son affected by this condition. Please contact Leah Lonsdale, GSNV Coordinator via email to leah.lonsdale@gsnv.org.au or call the GSNV Office on (03) 8341 6315.

Congenital Disorder of Glycosalation

Melissa is seeking to contact anyone affected by the Congenital Disorder of Glycosalation. Please contact Melissa via email to Melissa@baf.org.au

Diabetes Insipidus

A family with a child affected by Diabetes Insipidus would like to speak with others affected by this rare form of Diabetes. To contact the family, please contact Suzanne Baxandall from Diabetes Australia (Vic) on (03) 9667 1769. There is a Voicemail facility so if you miss Suzanne, please leave a message and she will return your call.

Ehlers Danlos Syndrome

Debbie is looking for other families affected by this condition, with a view to starting a support group for Ehlers Danlos in Australia. If you are interested in being part of such a group, please contact her on 0427 797 885

Adelaide family living with Ehlers Danlos Syndrome (type 3 though there are overlaps with other types evident). I am a professional counsellor and would be happy to be put in contact with other EDS people by phone. Our home number is: 08 8353 2574 (Kristina).

Hereditary Spastic Paraperesis

John would like to contact anyone affected by the condition Hereditary Spastic Paraparesis. To contact John, phone (03) 9467-3891.

Hyperspadius

Catherine is seeking to speak to another family affected by Hyperspadius. She is also very keen to set up a Support Group. Please phone Catherine on 9737-0503.

Isodicentric Chromosome 15

A Melbourne family with a 2 ½ year old son are seeking contact with others affected by Isodicentric Chromosome 15. For initial enquires please contact Zornitza Stark, Clinical Genetics Fellow via email to Zornitza.Stark@ghsv.org.au.

Kabuki Victorian Support Group

A new Kabuki Victorian Support Group is being formed. Please contact Stacey Mc Keirnan if this is of interest to you. Ph: (03) 5275 1542. For information on Kabuki Syndrome go to www.sakks.org.

Kennedy's Disease

Russell is seeking contact with anyone affected by Kennedy’s Disease. Please contact Russell via email to RussellAnderson@grocon.com.au.

Mitochondrial conditions

Rachel is keen to have a meeting for people affected by mitochondrial conditions. To express your interest contact Leah on leah.lonsdale@gsnv.org.au

Multiple Epiphyseal Dysplasia

Tania is keen to speak with other parents whose children are affected by MED. She is particularly keen to speak with others who have MED but not short stature. To contact Tania, please phone (02) 6056 8916.

Myotona Congenita

Colin is looking for other people diagnosed with Myotona Congenita. To contact Colin please phone 03 9752 0462 or on his mobile number 0400 848 748.

Noonan Syndrome

Janet, from WA, has a 2 year old daughter affected by Noonan Syndrome. Janet would welcome contact with other people living in Australia who are affected by this condition. Please contact Janet via email to jan_linnett@aapt.net.au

John is also seeking contact with anyone affected by Noonan Syndrome. Please contact John via email to johnnok2@bigpond.com

Osler Weber Rendu Syndrome

Narelle is seeking contact with anyone affected by the condition Osler Weber Rendu Syndrome. Please contact Narelle via email to rel@rapserv.com.au.

Progressive Supranuclear Palsy

Any families, who would like to network with a family in WA affected by this condition, please email Christina to christina@pwdwa.org. Christina’s role is that of Advocate, Disability First Stop, providing information and supported referral to adults recently diagnosed with an acquired disability.

Schmidt Mataphyseal Dysplasia

Tracey who lives in New Zealand has a 5 year old daughter affected by Schmidt Mataphyseal Dsyplasia and would like to make contact with other families who also have experience with the same condition. Please contact Tracey via email to gary.mcgaughey@paradise.net.au

Soto's Syndrome

A Melbourne family with a 5 year old son are seeking contact with other young families affected by Soto’s syndrome. Please contact GSNV office on 8341 6315 to get in touch.

Wilson's disease

Rose would like to speak with others affected by Wilson’s disease. To contact Rose, phone 9879 4887/ mobile 0400 205535 or email musicsoothes@msn.com

New Support Groups

Bailee Ada Foundation (Congenital Disorder of Glycosylation)

The foundation was started by my husband and I when our daughter Bailee passed away from Congenital Disorder of Glycosylation (CDG). She came down with gastro at the end of January 2007 and because of the underlying CDG she went into liver failure. Because this condition is very rare (when she was diagnosed in June 2006, she was around the 600th known case in the world) we did not know to act on the gastro any sooner.

The frustrations that my husband and I had during the course of her life were many. There was no support network in Australia (there is the American website that we were more than happy to go on) but there was no one here in Victoria or Australia that we could really talk to. So we thought, if we could help just one family not go through what we did, then it would make her passing a little bit more bearable.

Along with that, we also try to raise awareness for CDG and also raise money during the year to donate to the genetics department for research into CDG.’

The website we have set up is www.baf.org.au.

For further information please contact Melissa on 0414846603.

Jeune Syndrome Association

Claudine has started the Australian Jeune Syndrome Association, and invites people to join. Jeune Syndrome is a rare genetic multi-system disorder that affects the growth of the rib cage, thereby restricting growth of the lungs. Jeune Syndrome may also affect other parts of the skeleton, as well as the eyes, kidneys, liver and pancreas. You can find out more about Jeune Syndrome and the Association online at http://home.vicnet.net.au/~jeunesyn/index.html .

Kabuki Syndrome Group - Supporting Aussie Kids with Kabuki Syndrome

SAKKS stands for Supporting Aussie Kids with Kabuki Syndrome. SAKKS is an Australia-wide group, and has representatives and contact people in each State. SAKKS has a friendly web site with information about Kabuki Syndrome, group events and much more. To find out more about SAKKS, you can go to their web site (www.sakks.org), or contact Peta and Adrian.

Niemann Pick Type C Disease

Mandy is starting a Foundation for people affected by this condition and their families. Her two adult sons are both affected and she is keen to speak with others. Mandy invites others affected by Niemann Pick Disease to contact her by email (mandy@jacobsfertandgrain.com.au) or on her mobile 0409 573 740.

Support Group for Parents Proceeding with an Affected Pregnancy

Support, information, coffee and TimTams for parents and families proceeding with an affected pregnancy. Contact Kitty on 9571 6246 for more information.

XXWhy: The Australian Support Group for Klinefelter Syndrome

James has recently started an online support group for people with Klinefelter Syndrome. The website, at http://www.xxwhy.com, contains personal stories, information about Klinefelters, news and links. There is also an online support group mailing list through Google Groups at http://groups-beta.google.com/group/xxwhy. Visit the site to learn more, or email James@xxwhy.com.