Proposed outcomes

Care and Treatment

Improved diagnosis and care including reduced waiting periods;
Improved control of their health by the patients;
Enhanced coordination of care and communication between the patients and doctors.

Organizational Capacity

Enhanced organizational capacity to develop and implement policies in support of key issues (specialized care, patient registries, blood/product tracking, adverse reaction reporting/ post-marketing surveillance);
Increased awareness and supportiveness among targeted organizations and individuals;
Commitment of network members to maintain and expand network;
Increased level of collaboration (e.g. coordination);
Improved alignment of partnership efforts (shared priorities, shared goals, etc.).

Advocacy

Enhanced capacity for effective patient advocacy;
Improved management of organizational capacity of organizations involved with advocacy;
Improved strategic abilities;
Improved capacity to communicate and promote advocacy messages of organizations involved;
Improved stability of organizations involved with advocacy – increased number of partners supporting issues.

Long-Term Outcomes

Contribution to improved health system structures, mechanisms and resources for the management of rare blood disorders, especially in the blood and drug access systems;
Increased effectiveness of patient organizations in ensuring provision of comprehensive care;
Sustainable capacity to engage and mobilize support for patients with rare blood disorders;
Contribution to improved care for patients with rare blood disorders.

Final Outcome

Contribution to improved health outcomes for patients with rare blood disorders.