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Message from the President |
 CANADIAN FABRY ASSOCIATION
ANNUAL REPORT (2008)
Annual General Meeting Minutes: Appendix “A”
December 11, 2008
Submitted by: Adrian (Ed) Koning, President
In 2008, the Canadian Fabry Association celebrated it third anniversary as an incorporated non-profit organization. The CFA made significant progress networking with other patients as well as moving toward ever increasing awareness and education about Fabry disease. The CFA also moved toward addressing concerns with governments about uncertainty of continued access to enzyme replacement therapy (ERT) considering the three year funding agreement between the federal and provincial governments and the manufactures expires on October 1, 2009.
In February the first Fabry International Network organization of which the CFA plays a key role, hosted its first international conference on Fabry disease. This conference was attended by representatives from over 20 Fabry patient organizations from 18 countries in North and South America and the EU. Members to date now include those from Australia, New Zealand and Lithuania. FIN continues to expand its membership throughout the world. The fact remains that when compared to many other places in the world that provide ERT, Canada is still far behind in making ERT available at a young age as a preventative maintenance therapy to prevent organ deterioration.
February 29, 2009 marked the 1st International Rare Diseases Day, and the CFA with other organizations worked together with Canadian Organization for Rare Disorders (CORD) and utilized the occasion to conduct a number of public awareness and advocacy activities. On Thursday, February 28, more than 30 volunteers (patients, family members, and supporters) convened at Parliament Hill to visit with about 65 Members of the House of Commons and the Senate, to raise awareness about rare disorders and ask for support for the Chance for Life Fund. CORD also hosted a Breakfast Press Conference, which attracted more than 50 supporters, including Members of Parliament and their staff. The CFA participated in publishing a six-page supplement in the National Post featuring individuals and families affected by Fabry and other rare disorders, patient organizations, clinicians, Canadian researchers and biotechnology development companies.
Together with Canadian Organization for Rare Disorders (CORD) the CFA completed a survey from Canadian patients with a lysosomal storage disorder (Gaucher’s, Fabry’s MPS, Pompé’s and other) and presented the findings in a poster at the Lysosomal Disease Network World Symposium in February 2008, in Las Vegas, NV.
In April 2008 the CFA was represented at the 2008 Canadian Agency for Drugs and Technologies in Health (CADTH) Invitational Symposium Beyond the Evidence: Making Tough Decisions held in Edmonton, AB. The CADTH is a national body that provides Canada’s federal, provincial and territorial health care decision makers information about the effectiveness and efficiency of drugs and other health technologies.
The CFA continues to develop its successful partnership with Genzyme Canada Inc., Amicus Therapeutics Inc. and SHIRE Human Genetic Therapies.
The CFA has continued its outreach to new patients and their families and caregivers. Patient meetings were held in Ottawa, ON on September 20, 2008 as well as Chester, NS on November 15, 2008. For the first time, a government representative presented at a CFA patient meeting. A representative from the Canadian Institute for Health Research (CIHR) discussed their role in the Canadian Fabry Disease Initiative (CFDI). The first report from the CFDI for the period 2006-2007 is now available on the CIHR website at http://www.cihr-irsc.gc.ca/e/35799.html. The report for 2007-2008 is expected soon.
There is some good news as the Alberta government announced on Dec 8th 2008 a program called Alberta Rare Disease Drug Program. It includes drugs for life threatening diseases such as Fabry where the number of patients in the province is less than 50 or the prevalence of the disease is less than 1:50,000. The program is expected to begin on April 1, 2009. These drugs cost between $250,000 to $1 million per patient per year, and the government has stated that “For ethical and compassionate reasons, government is funding this program.”
The CFA has continued to provide support, education and information to patients, family members and caregivers seeking access to proper diagnosis, testing, treatments, and specialists. CFA is represented by many members including patients, family members, caregivers, medical professionals, researchers, manufactures and other stakeholders in Fabry disease.
Most recently the CFA board completed a Board Training & Development Session as well as a Strategic Planning Session. Key priorities include, increasing membership as well as re-engage existing members to help find and properly diagnose all Fabry patients in Canada. Other priorities include continued advocacy for accessible, sustainable treatment (fundamentals of “CFDI”), increase awareness and involvement of patients and host a national meeting. Another priority is to get governments re-engaged (federal/provincial/territorial) re: access and reimbursement of ERT. Finally the CFA Board must develop a succession plan with workload balance and personal balance as well as continue to develop fundraising opportunities.
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