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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 Idic15 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 Isodicentric 15 is a chromosome variance where the person is born with 47 chromosomes (or extra chromosomal material) rather than the normal of 46 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 Idic15 Clinic in each Province of Canada, to provide specific care management.
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 Idic15 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 around World Idic15 Day on October 15th, with the proceeds going directly into funding global research.
To have a Canadian based registry of persons with Idic15.
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 July 13, 2013
Last updated April 30, 2013
Last updated November 5, 2013
Last reviewed and updated November 16, 2013