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We strive to create awareness through community based events which will help us in our efforts to identify and bring together all Canadians who are Aniridia Patients. Follow our events for initiatives that you can participate in.
Learning is a life long endeavour and is particularly important to patients with Aniridia. As technology and treatments advance we must remain informed and current to make sure that patients get the best possible care.
Awareness is a multifaceted challenge that we are attacking via three channels, Community, Healthcare, and Government.
Our community initiatives are designed to let people know that we are out there looking for people with Aniridia. Being a rare disease with no pre-existing registry or support group the people facing the challenges of living with Aniridia are doing so alone and frequently with out the information and tools that they need to be their biggest advocate. We need to create the community awareness to seek out and find everyone with this condition.
Our healthcare initiative is to seek out dedicated and knowledgeable professionals in Canada to direct patients to for treatment options. All too often people with Aniridia are seeing eye care professionals with no knowledge of the condition because it is simply something that they may have only ever heard about barfly during their education. Many professionals will never actually deal with a person having Aniridia. To get proper care, treatment, and advice people with Aniridia need to see the proper professionals.
Our government initiatives are to seek out funding for matter related to Aniridia and to hopefully have more tests and procedures covered under the health care plans of each province to allow for proper diagnosis and potential treatments for people with Aniridia. One such primary objective is to have genetic testing covered in all provinces.
Our focus here is on patient support. While our mandate and objectives will change as we grow, right now our focus is to provide a support group for people with Aniridia so that they can tap into the collective knowledge and experience of others with Aniridia. Furthermore we will make those much important connections between patients and the proper professionals who know and understand the particular needs for Aniridia patients.
Education is the cornerstone for better health, better treatments, better technology, and ultimately cures. At this time our focus is to remain well informed on the research initiatives that are being carried out globally which may benefit people with Aniridia. Ultimately we strive to one day fund our own research initiatives.