About Us

Children with connective tissue disorders are often deprived of normal physical activities by fragile bones or skin, pain, joint stiffness or weakness, and, in some instances a shortened lifespan.

The Connective Tissue Dysplasia (CTD) Clinic brings together health professionals from the fields of Genetics, Rehabilitation, Occupational Therapy, Physiotherapy, Genetic Metabolic Medicine and Endocrinology. We provide comprehensive care programs for over 250 known disorders.

ConnecTeD is a committee who support the health and welfare of children and adults with connective tissue disorders. To provide that support, ConnecTeD raises funds for patient care, equipment and research.

Together the Clinic and ConnecTeD have supported parents and children with their everyday care. Over the last 15 years we have also helped with:

• Buying equipment to improve bone density.
• Purchasing special seating, a shower chair and wheelchairs for use of Clinic patients.
• Replacing the vacuum extractor required for orthotics manufacture. The clinic and indeed the entire hospital has benefited from this.
• Writing Therapy Guidelines for Early Management of babies with Brittle Bones.

“As parents we all hope for the best for our children. So when you’re told that your child has a lifelong medical condition, you and your child are suddenly thrust into a whole different world. For parents of children with connective tissue disorders, this scenario is even more daunting as many of the disorders, often with unpronouncable names, are rare with little or no immediate information available to the family.”

Professor David Sillence
Head, Connective Tissue Dysplasia Clinic
The Children’s Hospital, Westmead

ConnecTeD Achievements in Scientific Arenas:

• Supported the building of the Kazmierz Kozlowski Skeletal Research Library.
• 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.

The Centre for Children’s Bone Health developed regimens to evaluate therapy for Zoledronic acid and the oral Bisphosphonate Risedronate.