2006 Comprehensive Care for Rare Blood Disorders Conference

Comprehensive care conference a resounding success!

Participants at the Comprehensive Care for Rare Blood Disorders conference, held February 3-5, 2006 in Toronto, pronounced it a resounding success.

One hundred and fifty people attended including physicians, allied health professionals and representatives of patient organizations, provincial governments, blood system operators and the pharmaceutical industry.

Written comments included: “An impressive meeting,” “Very interesting and important,” “An informative and inspiring weekend.” Another participant wrote: “Having patients, physicians, scientists, governments and pharmaceutical companies attending at the same time is the way to make progress in patient care; pooling rare disorders together is a further major help.”

At the conclusion of the meeting, participants came to a consensus on the components of comprehensive care in the context of rare blood disorders, and passed other motions on the need for patient registries and the continued work of the Network. (See “Motions”)

Please click here for the complete proceedings of the conference.


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A conference on comprehensive care for rare blood disorders, organized by the Network of Rare Blood Disorder Organizations and supported by a grant from the Public Health Agency of Canada, was held in Toronto, February 3-5, 2006. One hundred and fifty people attended including physicians, allied health professionals and representatives of patient organizations, provincial governments, blood system operators and the pharmaceutical industry.

At the conclusion of the meeting the following motions were debated and voted on.

Motion 1
The Network of Rare Blood Disorder Organizations, collectively, and its member organizations, individually, will advocate with provincial/territorial governments for comprehensive care for rare blood disorders. The Network recommends that the following components, in principle, be considered essential to comprehensive care:

• Provincial designation
• National patient registries
• Self/family administration of therapeutics
• Patient, family and association involvement in care
• Education of patients, families and health care providers
• Standards of care and portability
• Decentralization through outreach
• Multi-disciplinary care
• Defined core services delivered by a comprehensive care team
• Programme evaluation and accreditation
• National collaboration among health care professionals and patient organizations
• Post-marketing surveillance including blood-borne pathogen surveillance
• Collaborative research
• Flexibility in organization

Adopted unanimously by all participants


Motion 2
The Network of Rare Blood Disorder Organizations recommends that:

Health Canada/PHAC, CIHR, Provincial and Territorial Health Ministries continue to support the work of the Network of Rare Blood Disorder Organizations.

Adopted unanimously by all participants


Motion 3
The Network of Rare Blood Disorder Organizations recommends that:

The Public Health Agency of Canada establish a national working group to coordinate and support the development of national data base registries, including quality of life measures, for the rare blood disorder disease groups including, but not limited to:

• Primary immune deficiency
• Hereditary angioedema
• Rare blood disorders
• Hemoglobinopathies
• Bone marrow disorders
• Porphyria
• Hemophilia/bleeding disorders

... and that Dr. Tom Bowen be mandated to represent the Network of Rare Blood Disorder Organizations for this initiative.

Adopted unanimously by all participants