Patient Groups / Health Consumer Organisations (HCOs)

Novartis interacts with a number of groups that represent Australian patients. Patient groups, also known as Health Consumer Organisations (HCOs), play the critical role of educating and supporting patients, as well as safeguarding the rights of patients and carers.

Novartis maintains relationships with patient groups to ensure we remain mindful of the patient’s perspective with regard to diseases and their related treatments.

When working with patient groups, Novartis;

• recognises the independence of the patient group and commits to safeguarding this independence;
• strives to achieve mutual trust and respect with the patient group, with each party recognising the objectives of the other; AND
• strives to improve the quality of peoples’ lives

In Australia, Novartis also follows the principles and guidelines of ‘Working Together: A Guide to relationships between Health Consumer Organisations and Pharmaceutical Companies’. This guide was the product of a collaborative partnership between Medicines Australia (the peak body representing the innovative pharmaceutical industry) and the Consumers Health Forum (the peak Australian body for HCOs). A copy of the guide can be found on the Medicines Australia website.

Novartis is committed to maintaining a transparent working relationship with patient groups. To ensure transparency, we disclose the names of patient groups in Australia, Europe, the US and international groups, with whom we maintain a relationship. This list will be updated at the beginning of each year.

Novartis and Patient Groups/HCOs

Alzheimer’s Australia

• Support of research including clinical trials, registries and studies in health outcomes

Australian Tuberous Sclerosis Society

• Support of research including clinical trials, registries and studies in health outcomes
• Educational materials including fact sheets on the medical aspects of Tuberous Sclerosis Complex (TSC)

Australian Diabetes Council

• Support for educational materials – the development of 2011/2012 Diabetes Management in General Practice Guidelines for Type 2 Diabetes

Australian Pituitary Foundation

• Educational grant to support patient seminars throughout 2011

Cure our Kids

• Grant to support patient/public education and disease awareness
• Support for Cure our Kids International Childhood Cancer Day

Cystic Fibrosis Australia

• Grant to support educational events

Consumers Health Forum of Australia (CHF)

• Corporate member of the CHF

Eczema Association of Australasia

• 2011/12 Annual Corporate Membership

Epilepsy Queensland

• Grant to support patient/public education and disease awareness

Hepatitis Australia

• Grant to support patient/public education and disease awareness and activities associated with the 2012 National Hepatitis Awareness week

Leukeamia Foundation

• Support of printing patient materials, Understanding CML booklet and patient newsletter

Macular Degeneration Foundation

• Support of national disease awareness and educational activities

The McGrath Foundation

• Educational grant to support breast care nurse education

Meningococcal Australia

• Support of national disease awareness activities

The MS Society of Tasmania

• Support of national disease awareness activities

Multiple Sclerosis Society of Queensland

• Support of national disease awareness activities

Myeloma Foundation of Australia

• Educational grant to support foundation’s activities

MS Australia

• Support of national disease awareness activities
• Support of medical research activities

New Zealand Acromegaly Society

• Grant to support patient/public education and disease awareness

Parkinson’s Western Australia

• Grant to support patient/public education and disease awareness

Prostate Cancer Foundation of Australia

• Grant to support patient/public education and disease awareness including bronze sponsor of the 2011 Prostate Cancer Foundation of Australia

Thalassaemia Australia

• Grant to support patient/public education and disease awareness

Transplant Australia

• Grant to support raising awareness of organ donation in Australia

The Unicorn Foundation (Neuroendocrine Tumors)

• Grant to support patient/public education and disease awareness
• Support of neuroendocrine research

For information relating to Europe, the US and international groups, please visit: www.novartis.com