The Canadian Fabry Association is a group made up of people who know what it’s like to live with Fabry disease. Whether it’s growing up experiencing pain in their hands and feet or parents watching as their children deal with the symptoms.
The CFA started out with a few people gathering together to support one another and then, as news of trials for a treatment became more widespread, families met one another. Slowly provincial support networks grew.
As the drug trials progressed, the prospect that the drugs might not be approved after patients were seeing the beneficial results on their health and daily lives caused individuals to write letters and request meetings with their local or provincial government representatives asking for support. The necessity for patients to advocate and lobby their governments for assistance became apparent, who better to tell their story than the people who were living it?
Through the lessons learned in these efforts, the separate provincial groups had turned into a strong voice for Fabry patients and it was only a matter of time until the provincial groups joined to form a national patient support group.
We have received a lot of support ourselves over time, from the doctors and nurses who treat us, from other patient advocacy groups and members of all levels of government.
So we are really just a group of regular people that have come together in a common cause. And through that common bond have tried to help others as well as ourselves.
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