supporting children, adults and families

Raising awareness, educating and fostering research to improve quality of life for those affected by Connective Tissue Disorders

ConnecTeD Foundation (previously ConnecTeD for Kids) is a committee and support network, who assist in supporting the health and welfare of children, adults and families affected by connective tissue disorders.

ConnecTeD Foundation has three primary objectives:

  • Encourage education about Connective Tissue Disorders (CTDs) to medical professionals and members of the community to:
    • raise awareness
    • aid in medical diagnoses
    • support life long management
  • Foster research for all CTDs
  • Provide a support network for individuals, carers and families affected by CTDs

ConnecTeD Foundation’s hope is that through continued awareness, education and support that we can provide shared knowledge to impact and serve the greater community.

Our mission vision and story

— Our Mission

Our Mission is to improve the quality of life for all those affected by connective tissues disorders through education, research and support.

— Our Vision

Our vision is to see a world where every person affected by a CTD has the correct management of their condition by fully trained professionals, with easy access to support equipment and supplies.

— Our Story

ConnecTeD Foundation began over 28 years ago as a small support committee, founded by families affected by CTDs. Today we have grown into a foundation where we have held national conferences, funded life changing research and continue to act as an umbrella organisation to other CTD support organisations.

Our Achievements

Education and Equipment

  • Buying equipment to improve bone density
  • Purchasing special seating, a shower chair and wheelchairs
  • Replacing vacuum extractors required for orthotics manufacture
  • Writing Therapy Guidelines for Early Management of babies with Brittle Bones
  • Presenting Australia's inaugural Ehlers-Danlos Conference to over 300 participants with International speakers
  • Yearly education days
  • Regular awareness events
  • Supported the building of the Kazmierz Kozlowski Skeletal Research Library

Scientific and Research

  • Developed in 1996 the first program in Australia for Bisphosphonate treatment of Osteogenesis Imperfecta and specific Orthopaedic conditions with low bone density
  • Demonstrated in 1998 the successful treatment of Chronic Recurrent Multifocal Osteomyelitis with Cyclic Intravenous Pamidronate
  • Supported formation of the Centre for Innovative Genetic Therapies and the Centre for Children’s Bone Health
  • In 2001 The Centre for Innovative Therapies delivered the first Enzyme Replacement treatment in NSW for skeletal complications of Mucopolysaccharidoses
  • 2011 and onwards, supporting and funding vital research into Connective Tissue Dysplasias (dedicated research)
  • The Centre for Children’s Bone Health developed regimens to evaluate therapy for Zoledronic acid and the oral Bisphosphonate Risedronate.
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