Our Partners











Objectives


1. Create an active network of key volunteers

Build on an active network of key medical and non-medical volunteers and staff from within the following blood disorder groups:
  1. Aplastic Anemia and Myelodysplasia Association of Canada
  2. Canadian Association for Porphyria (CAP)
  3. Canadian Association of Paroxysmal Nocturnal Hemoglobinuria (PNH)
  4. Canadian Hemophilia Society (CHS)
  5. Canadian Hereditary Angioedema Network (CHAEN)
  6. Canadian Immunodeficiencies Patient Organization (CIPO)
  7. Canadian Organization for rare Disorders (CORD)
  8. Canadian Sickle Cell Society (CSCS)
  9. Quebec Sickle Cell Anemia Association (QSA)
  10. Sickle Cell Association of Ontario (SCAO)
  11. Sickle Cell Disease Parents’ Support Group of Ottawa (SCDPSC) 
  12. Thalassemia Foundation of Canada (TFC)

This objective will address the priority of cross-sector collaboration and relationship building in addressing prevention and health promotion issues.



2. Raise the level of awareness and knowledge

Raise the level of awareness and knowledge of the patient groups' roles in the following key issues:
  1. Comprehensive care for complex, rare disorders
  2. The importance of patient registries
  3. Treatment guidelines
  4. The tracking of blood and blood products to permit inventory management and effective recall and notification procedures
  5. The need for active adverse reaction reporting and post-marketing surveillance of therapies used to treat these disorders
  6. Access to medication (licensed products, through the Special Access Program or through research protocols)
  7. Orphan drug legislation
  8. Educational guidelines to maintain the same level of education across Canada
  9. Reduction of the number of waiting lists and waiting times for various treatments.

This objective will address the priorities of strengthening organizations' volunteer base through training, increasing the role and impact of the voluntary health sector within the health care system and, through the use of a common Web site to share information, address the priority of effective use of technology.



3. Share successful models that have been developed to deal with the above issues from a patient group perspective and share strategies in ensuring their implementation.

This objective will address the priority of developing models for cross-sector collaboration and relationship building in addressing prevention and health promotion issues.



4. Facilitate the development of policies on the key issues within each of the blood disorder groups.

This objective will address the priority of building capacity within organizations in this sector to develop policies on the key issues identified.



5. Create permanent links among these groups which will permit these organizations to be productive and sustainable.

This objective will address the priority of cross-sector collaboration and relationship building in addressing prevention and health promotion issues.