First Annual Canadian Fabry Association and National Patient Conference
May 12 and 13, 2006 in Halifax, Nova Scotia
The Canadian Fabry Association held its First Annual Canadian Fabry Association and National Patient Conference on May 12th and 13th 2006 in Halifax, Nova Scotia at The Lord Nelson Inn & Suites. The conference began on  Friday evening at 8PM with a casual meet and greet social time. On Saturday breakfast was very early at 7:00AM with the meeting commencing at 8:00AM. Various Fabry patients, their families, friends and supporters from all over Canada attended this meeting.
Once the meeting was called to order and objective and agenda reviewed, Emily Somers, Director, Pharmaceutical Services Nova Scotia and Susan Paetkau, Director, Drug Programs Branch Ontario provided an update on behalf of the governments on the status of access and funding of enzyme replacement therapy (ERT). They indicated that a three-year funding agreement between provinces, the federal government and the two companies that manufacture ERT would be approved v ery soon. All in attendance were very encouraged and many questions were raised regarding timing, details and logistics.
Then Dr. M. West and Dr. J. Clarke presented the Canadian Research Protocol which is a Canadian made registry proposed to government to track and monitor the effects of ERT over the life of the three funding agreement. They provide some information and background and indicated that any Fabry patient that wanted access to ERT must meet the strict Canadian guidelines and register in this Canadian registry. The CFA was encouraged to assist in communicating with all Canadian patients to register in this registry even if the patient would not qualify and/or require ERT.
The first General Meeting of the CFA was then called to order. The meeting provided an opportunity for all to hear about the background, structure, proposed bylaws, budget and priorities of the CFA. A vote by members fully endorsed and supported all motions tabled during this time. Those nominated to the board were given an opportunity to introduce themselves and the 1 1 were then elected as the first board of directors of the CFA. The board members elected were, Julie C. and Darren B. of BC, Ed Koning of AB, Durhane WR, Donna and Julia S., and Rick S. of ON, Gaetane and Roseline S. of PQ, and Evelyn W., Graham C. of NS.
Dr. Sarah Dyack, Dr. Michael West, Dr. Robin Casey and Dr. Jeffrey Medin provided valuable information in their presentations, which covered various topics on Fabry disease, treatmen t and the latest research initiatives. Topics covered included, Living Well with Fabry Disease: Patient Self-Management, ERT - Guidelines and protocols for Adults, Children & Home Infusion, Genetic and Psychosocial Support, Update on the 2 ERT Products and Fabry Registries as well as Gene Therapy for Fabry Disease. The meeting ended with a Q & A Panel Discussion
This conference was made possible by unrestricted educational grants from Genzyme Canada Inc., Shire Human Genetic Therapies and Amicus Therapeutics. To allow for maximum participation, several travel scholarship were awarded to allow  many to attend this meeting. Thanks to all that came, with a special thanks to all those that presented. Everyone agreed that the first meeting and conference of the CFA was a resounding success.
If you would like more information about the meeting or details of presentations, please contact the CFA.
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