Registration is open for patient organisations wishing to join National Patient Organisation Networks (NPON)
NPON is positioned as a professional body for patient organisations and the NPON community in Australia identified the need to demonstrate the contribution of patient organisations in local health systems.
Some of the next activities we will be working on in each network are:
• Developing a scope of practice statement for patient organisations
•Identifying standard operating procedures for common activities
• Developing a code of conduct/Standards for patients organisations
• Develop NPON as an accreditation body for patient organisation activities
In addition to registering your patient organisations, EOIs are open for Standing Committee members to guide this global health initiative.
Pathways is open to Patient Organisations wishing to have a Pathways specialist nurse in USA, UK, Canada, South Africa, Uganda, Nigeria, New Zealand and Australia. Please get in touch at administration@cc-dr.org
PHASE 1 Audit of Swiss Patient Organisations
CCDR conducted phase 1 of an audit of patient organisations in Switzerland. The aim of stage one of the audit was to:
To identify charities that are focused on health or chronic conditions registered federally in Switzerland
To identify charities that are patient organisations, that is, provide patient support, information or advocacy
To understand the breadth of disease areas covered by patient organisation in Switzerland
Click here to read the report
CCDR has reported on the following conditions through our PEEK program. Please contact us to access reports at administration@cc-dr.org
Ovarian cancer
Breast cancer
Spinal Muscular Atrophy
Mitochondrial disease
Chronic kidney disease
Chronic heart failure
Lung cancer
Bladder cancer
Breast cancer
Atopic dermatitis
Asthma
Tuberous sclerosis
Rheumatoid arthritis
Crohn’s disease
Ulcerative colitis
Chronic lymphocytic leukaemia
NMOSD
Stroke
Amyloidosis
Prostate cancer
HER2 positive breast cancer
HER2 positive breast cancer
Triple negative breast cancer
Hormone positive breast cancer
Liver cancer
Lupus
Bladder cancer
Lung cancer
CAR-T treatable blood cancer
Heart and blood vessel conditions
Rare conditions
Hidradenitis supurrativa