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Idic15 Canada is a not for profit organization which provides resources, collaboration, advocacy and research to families living with Chromosome 15q11.2-13.1 Duplication Syndrome.
This organization is born from the need to advance medical, family resources and awareness in Canada. There are over 40 known families in Canada, but many areas of the country are not diagnosing the disorder because of lack of medical awareness. Idic15 Canada is connected to a global community of Chromosome 15q11.2-13.1 families through a Facebook outreach and Twitter and intend to be a transparent organization with international scientific and medical collaboration as our cornerstones.
To provide resources, collaboration, advocacy and research to families living with Chromosome 15q11.2-13.1 Duplication Syndrome.
We will uphold our mission by:
Because Chromosome 15q11.2-13.1 is a chromosome variance, we have this represented in the icon, hence the green chromosome in the purple highlighting the difference.
The purple is the dark purple to symbolize epilepsy and the green represents growth and hope and change.
We are working towards having least one Chromosome 15q11.2-13.1 Clinic in each Province of Canada, to provide specific care management. We are also working towards International collaboration and specific clinics.
To have all the clinics encompass the key medical professionals that meet the medical needs of our Idic15 children and adults, and to have an established protocol that will be maintained throughout each clinic.
To initiate an annual mini symposium to enable all members of our scientific and medical teams to brainstorm and initiate a workable care management and research plan.
To initiate International Clinics and engage International Scientists to collaborate towards Chromosome 15q11.2-13.1 Duplication Syndrome research and management.
To continue to add to both our Canadian Family and Global Family Resources, including setting up a Canadian Family Advisory Committee who have a voice in different aspects of Idic15 Canada including research funding allocations, promotion and advocacy.
To encompass international involvement of families and organizations in a global collaboration in the fund raising initiatives in February and November each year as well as having specific awareness goals around World Idic15 Awareness Day on October 15th. All proceeds raised go directly into funding global clinical research.
To have a Canadian based registry of persons with Chromosome15q11.2-13.1 Duplication Syndrome.
Idic15 Canada's website creation, maintenance and it's ongoing fees are strictly through personal and private funding of the owners.
Idic15 Canada does not host or receive funding from advertising.
We, Therese McKirdy and Lori Eisenhaur, Owners, Founders and Authors welcome all input and suggestions. Please do not hesitate to contact us.
Last reviewed and updated September 27, 2014
Last updated November 5, 2013
Last reviewed and updated November 16, 2013