Who We Are

We are completely patient centric and controlled.  Clinicians, pharmaceutical companies or other external stakeholders do not manage us.  We care because most of us in Dragon claw have rheumatoid disease or lupus and we want to reduce stress and isolation and make a positive difference to the way health jurisdictions treat people with chronic disease.  We are all unpaid volunteers.

Dragon Claw (www.dragon-claw.org) is owned and operated by a not-for-profit company, Dragon Claw Website Developments Pty Ltd (ACN 169406982).  It was established on 6 May 2014 and is registered in NSW, Australia. The site is designed for people with Rheumatoid and Lupus disease, young people with arthritis and carers who may be located anywhere in the world.

We plan to develop Dragon Claw in a way that will enable better management of self-care, reduce member isolation and stress and provide a set of tools and services that will make a difference.

Dragon Claw is a not-for-profit company registered under Australian law.  The company has three directors:

Michael Gill Michael Gill

 

Denis Tebbutt Denis Tebbutt

 

IMG 1526 Susan Hughes

 

Research and Michaels’ own experience indicate that people with a chronic condition are not well managed and supported through the health system.  This would be a common experience in most health jurisdictions throughout the world.  Information provided is incomplete, clinicians usually focus on a few elements and wider support requirements are completely ignored.  Dragon Claw hopes to address these issues.  To ensure accountability and access Dragon Claw has established a Governance Committee that meets about ten times a year.

You can contact the Dragon Claw administration and the directors via This email address is being protected from spambots. You need JavaScript enabled to view it.

Aim

Dragon Claw aims to provide information, community and support for registered users.  The site is designed to minimise the stress and anxiety felt by many carers and patients suffering from Rheumatoid Arthritis, Lupus and Juvenile Idiopathic Arthritis (JIA), diagnosed as medium to severe.  We use the term Rheumatoid Disease (RD) to cover the three diseases and to de-emphasise the term ‘arthritis’.  The term ‘arthritis’ is both misleading and fails to denote the wider aspects of the disease.

Please note, this site is not a medically accredited site and does not purport to provide medical or diagnostic advice.

Concept

People with Rheumatoid Disease often go through three distinct stages; crisis and isolation, acceptance and stabilisation and finally living with the condition.  Associated with this is the development of co-morbidities, especially those diagnosed with medium to severe conditions.

This implies that the progression of the disease intersects with the development of other disease states as time goes by. To help address these issues, Dragon Claw encourages electronic collaboration, provides reference information and allows users to detail their own experiences and make suggestions.  We believe that RD is a multi-dimensional condition that requires management across many subject domains, not just those defined as clinical.

We believe that to maximise support to the carer and to the registered user, the web site must dynamically relate a person’s disease state to his or her own specific co-morbidities.  The way the site eventually operates will increasingly reflect this dynamic relationship.

For many people Rheumatoid Disease (RD) can be felt like an unpleasant animal moving around the body biting and scratching.  Occasionally, the dragon rears up and breaths fire, which is felt as a flare, hence the name.

Our Patron

dr haikerwal 

Dr Mukesh Haikerwal is a General Medical Practitioner in Melbourne, Victoria

He is the former Chair of Council of the World Medical Association, working with 106 member National Medical Associations (NMA).

He is a Professor in the School of Medicine in the Faculty of Health Sciences at Flinders University in Adelaide, South Australia.  He is also Chair of the Beyondblue National Doctors’ Mental Health Program and a Co-Chair of the Australian Asian Medical Federation. He sits on the Advisory Board of Brain Injury Australia.  He currently is the Chair of the Australian Institute of Health and Welfare.

He was the 19th Federal President of the Australian Medical Association, its Federal Vice President and, prior to that AMA Victorian State President.

Funding

The website is and will be funded in four ways, as follows:

  • Personal funds from the directors;
  • Philanthropic support from business entities;
  • Funding via our Crowd Sourcing applications; and
  • From selling de-identified patient data.

All excess funds (if any) are used to maintain and expand the site. The company directors do not take a salary or seek reimbursement for services.  Please refer to our donor’s page for more information.

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