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Canadian Fabry Association, Fabry International Network and Access to Enzyme Replacement Therapy |
CFA together with CORD (Canadian Organization for Rare Disorders) and one other organization co-authored a letter to all health ministers urging that ERT be implemented immediately (a commitment they made back in October 2005) and to express the concern at their suggestion that the Fabry agreement be used as a model for a policy on Expensive Drugs for Rare Disorders, as discussed in their June 2006 Progress Report on the National Pharmaceutical Strategy. Canada should join the rest of the world by participating in the appropriate international patient registries.
Canada is far behind the rest of the world in providing ERT to its Fabry patients as well as providing access to rare or ‘Orphan’ drugs. In fact Canada is the only developed country in the world not to have an Orphan Drug Policy. This is one reason that the CFA has joined the Fabry Intentional Network (FIN). The primary aim of the FIN is to facilitate collaboration between organizations to support those affected by Fabry disease. It seeks to do this primarily through enabling communication, promoting best practice and acting as an independent forum for Fabry patients around the world.
FIN is connected to over 20 countries including Canada and the USA. FIN was incorporated in the Netherlands utilizing the Dutch laws for non-profit organizations. Membership is free and open to any national patient organization in which Fabry patients are represented. A board of directors was elected and the current President and Treasurer are both from the Netherlands. The past president of Norway’s Fabry Association is the Vice President and the Secretary is Adrian Koning, a Fabry patient, and President of the Canadian Fabry Association. His wife Marlene is also a board member and has a passion for helping caregivers of Fabry patients.
The board meets regularly via telephone conference. Canada and Poland currently need the most help as these countries do not fund or provide access to enzyme replacement therapy (ERT) based on international criteria and guidelines. To improve communication one focus is on developing its website.
There are two companies that manufacture ERT and although competition is good, this fact has caused strife within the Fabry community. The principle foundation of FIN is to be neutral and independent in all of its communication, action, and decisions worldwide and one long term goal to promote a single world wide International Fabry Conference that allows a place where all relevant aspects and information of Fabry disease and current or future drugs and therapies can be shared in a non biased environment.
If you would like more information about the CFA, FIN or the situation of access to rare disorders in Canada, contact Adrian Koning at
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