
Objectives
- Empower and build capacities for patients and their families through strengthening disease specific knowledge;
- Inform the medical and patient communities on the state-of-art clinical management of haemoglobin disorders, the latest scientific advancements in the field, and regulatory developments for new drugs and therapies;
- Extend the knowledge gained in experienced countries to other countries through sharing experiences and best practices;
- Develop the skills and capacities of patients for the advocacy and productive participation in decision making at the country and regional levels;
- Educate and create core groups of patients in each country to support and strengthen their role in monitoring their own disease;
- Develop a robust infrastructure for National Patients’ Associations, making them truly supportive to its patients and their families at the country level.