I’ve found these links below to be a great source of information, guidance and support.
I understand it can be hard sometimes to know if your heading in the right direction but you just need to keep searching and remember the reason why.
I do a lot of research myself and I’ve found that most of the time it’s up to me to find what I need.
Getting the right information, making a lot of phone calls, keeping track of people’s names of whom I’ve spoken to is a great key.
This website provides a central location for factual information that is easily digestible to understand, as well as have a central location for support services that are specialists, or have a passion for Chromosome Variation.
CSVXY provides support for patients and families of all ages and stages, educate others to provide a greater understanding on chromosome variations, collaborate with medical specialists, educators and GP’s to obtain and provide the latest research outcomes to translate back to the community.
This support group has been of great help to us, they offer a wonderful service with carers that respect and understand sometimes even just having someone to listen, can be very helpful.
This website has great information relating to Rare Diseases
GENETIC AND RARE DISEASE NETWORK
GaRDN works to empower individuals and their families to reach positive health outcomes. We inform health professionals and the wider community on the perspectives and experiences of those affected by genetic and rare diseases. We connect key stakeholders and service providers with people affected by genetic and rare diseases.
Unique- Understanding Chromosome Disorders http://www.rarechromo.org/html/home.asp
The Disability Services Commission is the State Government agency responsible for advancing opportunities, community participation and quality of life for people with disability.
Established in 1993 under the Disability Services Act 1993, the Commission provides a range of direct services and support and also funds non-government agencies to provide services to people with disability, their families and carers.
The Commission also partners and collaborates with disability sector organisations, business and government, and other stakeholders to improve participation, inclusion and access for people with disability across the community.
I have found the Australian government health sites to be a good source of information when trying to find support and resources within your local area.