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History and Introduction

Prepared for the Canadian Association for Porphyria

Disclaimer
Care has been taken to ensure that the information in this guide is accurate at the time of production. This information is, however, intended for general guidance only. The Canadian Association for Porphyria disclaims for itself and for the author of this guide, all responsibility for any mis-statements or for consequences of actions taken by any person while acting on information contained herein. Physicians and patients must make their own decisions about therapy according to the individual circumstances of each case.

    Because porphyria has been generally considered a rare disease, until 1988 there was in Canada no source of information and no source of support for those affected by the disease. As well, there are few physicians familiar with either symptoms of or treatment for this disease. Knowledge about porphyria is quite limited and therefore, up-to-date printed information has been almost non-existent.

    Canadian Association for Porphyria (CAP) had its beginning as an idea in the mind of a person who had experienced the helplessness, the hopelessness, and the complete lack of information, knowledge, understanding, and assistance available when confronted with the trauma of having and dealing with porphyria.

    The idea was transformed into action. With a group of six volunteers, a pot of $350.00, and armed with a mission "to improve the quality of life for people affected by porphyria", the work began. In late 1988 the Canadian Association for Porphyria was incorporated and registered as a national charity with its office in Neepawa, Manitoba.

    A Board of Directors conducts and directs the operation of CAP. Committees for finance, fund development, publicity, and newsletter publication work with and under the direction of the Board of Directors. There is also an Advisory Board of 20 people. This Advisory Board provides the Board of Directors with a source of expertise in legal, financial, and especially in medical matters relating to the operation of the CAP. Individual members also provide written information for educational material published and distributed by the foundation. The job of Executive Director and all positions on the Advisory Board, on the Board of Directors, and on the committees are filled by volunteers.

    Funding for the operation of the foundation comes from memberships, private donations, memorials, service club and business donations, and from fund raising activities sponsored by the foundation. Ongoing government support is being sought. A typical annual operating budget of expenditures totals $100,000.00.

Some activities and programs underway include:

	distribution to the general public of copies of a pamphlet about porphyria
	distribution of articles on the four most common types of porphyria, for use by those with the disease
	distribution of a detailed booklet about the porphyrias, for use by doctors and others in health care
	publication and distribution of a newsletter twice a year to members and all people on the database to selected doctors, universities, public libraries, and health care facilities in Canada
	distribution of a "Guide to Diet and Porphyria" booklet
	distribution of a "Guide to Drugs and Medications" booklet
	provision of support through:
	- group meetings      - counseling: one on one, telephone, mail, email
	maintenance of a database of all members, doctors specializing in porphyria, health care and educational facilities dealing with porphyria, donors, and all other interested people
	provision of references to doctors specializing in porphyria for patients or physicians requesting more expertise
	continuance of an ongoing program of publicity about porphyria and CAP to create awareness about the disease and services offered by CAP
	sponsorship and initiation of fund raising drives and ventures to ensure financial resources are adequate to maintain programs and to begin new programs as required
	networking globally with other porphyria support organizations to share information and recent developments in research and treatment techniques
	promotion and support of research

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