Regional Conferences and specialized workshops
CF is a multi-organ disease and children with CF need multidisciplinary team care in CF centreâ€™s regularly. This multidisciplinary team should consist of a CF Nurse, Pediatric Pulmonologist, Pulmonologist, Gastroenterologist/Nutritionist, Nurse, Physiotherapist, Microbiologist and Psychologist/Social worker who have been trained in the specific needs of patient care. Daily home care that requires both parent and patient participation is also needed to ensure the patients experience a better quality of life and life expectancy. A corner stone to a program that addresses the needs of patients is education that creates multidisciplinary teams and carries that high quality care to the home and daily life of each patient. Educational programs are developed with consideration of the following;
- Current level of knowledge of the disease amongst medical professionals, parents and patients
- Current treatment options available
- Economic situation
- Medication options
- CF Association both patient and medical if available
- Government participation in treatment of patients (is any program in place?)
- Availability of necessary equipment, microbiology lab and CF Centreâ€™s
- Number of known/suspected patients
- Diagnostic options
- Culture considerations
- Religious considerations
If educational programs are designed without first analysing the situation they may well be too difficult to learn from or lacking in advanced treatment options. It is imperative that a full analysis be run in each region garnering the above information and then developing a programme aimed at improving quality of life and life expectancy of patients.
The aim of the proposed project is to educate medical professionals in appropriate diagnosis, treatment and management of Cystic Fibrosis developing countries or countries who lack adequate CF care. This education will include working to develop a low budget optimum treatment plan. The project will also address the needs of patients and parents offering education in daily care, use of equipment, medication and establishing networks between local and international CF patient organizations.
- Analyze and develop educational conferences in the treatment and management of CF in 2 regions annually
- Conduct educational workshops/conferences for medical professionals, parents and patients in the treatment and management of Cystic Fibrosis.
- Spread awareness of Cystic Fibrosis in regions of the world where the disease is prevalent but under diagnosed and mistreated resulting in a high mortality rate amongst young CF patients.
- Develop networks for the continued exchange of information and resources for support.
- Further develop the program to allow it to be replicated in regions around the globe.
- Evaluate outcomes of the program.
Each conference is subject to different costs depending on where in the world we host an educational offering. On average CFW spends 40,000 USD per regional conference and approximately 15,000 USD for local family workshops and allied health training.
SkopjeMacedonia April 2009
Amman, Jordan December 2009 (Venue/date to be determined)
Brisbane Australia September 2009