Links

Here are some links to other organisations and groups that are linked to ConnecTeD Foundation in some way and/or to the work that we do. If you would like your website added to this page, please use our contact form.

EDSAUS - Aussie support for Ehlers-Danlos Syndrome and other hypermobility disorders

EDSAUS is the official ConnecTeD Foundation support group for Ehlers-Danlos Syndrome and related hypermobility disorders. EDSAUS was first formed as an online support network with a focus on providing network support for this rare condition. In December 2012, EDSAUS officially merged with ConnecTeD Foundation as its support group and network for Ehlers-Danlos Syndrome and other related hypermobility disorders.

Link: www.edsaus.com.au

Short Statured People of Australia (SSPA)

The Short Statured People of Australia (SSPA) is a non-profit organisation that provides support and information for people with conditions of dwarfism, their families and other interested members of the community.The SSPA actively supports the Children’s Hospitals, Bone Dysplasia Clinics and Genetic Support Networks throughout Australia.

Link: www.sspa.org.au

OI Society of Austraila

The OI Society of Australia is primarily a support group for persons with Osteogenesis Imperfecta. The OI Society is committed to encouraging and supporting research into this rare connective tissue disorder along with the provision of education to the wider community and increasing awareness of Osteogenesis Imperfecta to both the general public and professionals.

Link: www.oiaustralia.org.au

MPS Australia

The MPS Society supports individuals affected with MPS, parents of affected children, other relatives and friends of affected children. The MPS Society offers support to those affected by related disorders also.

Link: www.mpssociety.org.au

Wish Bone Day

Wishbone Day is an international community awareness effort for Osteogenesis Imperfecta (OI), also known as 'brittle bones'. Wishbone Day is officially celebrated on the 6th May each year.

Link: www.wishboneday.com
Link: www.connectedfoundation.org.au/wish-bone-day/


Useful Books

Skeletal Joints - Joint Hypermobility Handbook - Available from The Sydney Children's Hospital Network (Westmead) KidsHealth Book Shop using the downloadable order form.

Osteogenesis Imperfecta - Caring for Children and Adolescents 2nd Electronic Edition - Authored by Professor David Sillence (Head, Connective Tissue Dysplasia Clinic at The Sydney Children's Hospital Network (Westmead)) and Dr Jenny Ault (Consultant in Paediatric Rehabilitation at The Sydney Children's Hospital Network (Westmead)). Provided free to download, courtesy of OI Australia (external link)


FollowFollow