Association of Genetic Support of Australasia
Organisation
-
AboutThe Association of Genetic Support of Australasia facilitates support for those affect directly or indirectly by rare diseases (80% of which are genetic in origin). We offer a wide range of support options, including seminars, sibling workshops, networking and peer support events with other carers, telegroup counselling and annual information days.
AGSA is recognized as a peak body in patient support and collaborates with similar organisations and health professionals both nationally and internationally. We have a rare disease register representing over 1200 rare conditions which enhances the ability for contact between families, individuals and support groups. -
Areas Of Interest
Achondroplasia (Dwarfism) Addison's Disease Adrenoleukodystrophy Albinism Alpha-1 Antitrypsin Deficiency Alpha-thalassaemia Alport Syndrome Androgen Insensitivity Syndrome Angelman Syndrome Apert Syndrome Arthrogryposis Multiplex Congenita Batten Disease Beckwith-Wiedemann Syndrome Behcet's Disease CHARGE Syndrome Cardiomyopathy Charcot-Marie-Tooth Disease Chromosome 18 Trisomy (Edward Syndrome) Congenital Adrenal Hyperplasia Cornelia de Lange Syndrome Cranio-facial conditions Cri Du Chat Syndrome Cystinuria Ehlers-Danlos Syndrome Fabry Disease Facioscapulohumeral Muscular Dystrophy Fragile X Syndrome Friedreich's Ataxia Hirschsprung disease Huntington's Disease IgA Deficiency Jeune syndrome Kabuki syndrome Klinefelter Syndrome Marfan Syndrome Muscular Dystrophies Neurofibromatosis Pallister-Hall Syndrome Prader-Willi Syndrome Rubinstein-Taybi Syndrome Smith-Magenis Syndrome (SMS) Spinal Muscular Atrophy (SMA) Tay-Sachs Disease Treacher Collins Syndrome Trisomy 13 (Patau Syndrome) Tuberous Sclerosis (TSC) Turner Syndrome
- Answers contributed by Association of Genetic Support of Australasia
-
Q: What is neurofibromatosis?Neurofibromatosis Association of Australia (NFAA) Inc. www.nfaa.org.au for further information and contact with others with the same condition. read more
-
Q: What is Prader-Willi syndrome?
For further information please contact the Prader Willi Syndrome Association of NSW (Aust) Inc www.pws.org.au/nsw read more
-
Q: What are the symptoms of Smith-Magenis syndrome (SMS)?
AGSA has profiled this condition in our newsletter with a family story. Please contact AGSA for further information. read more
-
Q: What is Rubinstein-Taybi syndrome?
AGSA has a number of families on our database with this condition and there is a support group that can be contacted on [email protected] read more
-
Q: How to care for a child with Trisomy 18?
The Chromosome 18 registry is an excellent support organisation and they are involved in research studies. www.chromosome18.org/ read more
-
Q: Can Cornelia de Lange syndrome be treated?
If you contact this association they will be able to point you in the right direction. The Cornelia de Lange Syndrome Associationwww.cdlsaus.org/ read more
Contact information
-
-
66 Albion Street
Surry Hills 2010 - 02 9211 1462
- Visit organisation website
Healthshare is intended for Australian residents only. It is an information resource and not a substitute for medical advice, diagnosis or treatment by a professional.
© 2013 Healthshare Pty Ltd