December 20, 2013

Idic15 Canada has been awarded their first grant to support their very ambitious research agenda. Awardees are selected by their choice to take on research problems that reflect patients' priorities, are solvable for today's patients and take on the role of research champion, one that moves an investigation from one expert to the next in rapid fashion.

We are especially proud to be awarded a grant based on this criteria.

The Rare Disease Foundation grant is being utilized to establish a national, multifaceted registry that will be co-administered through our Idic15 clinics.

The information gleaned from the project will be used to establish best practice guidelines for all of the therapeutic and family needs of our children and will be in compliance with the EURORDIS-CORD-NORD joint declaration of 10 key principles for Rare Disease Patient Registries. It will unite the medical community in how the needs of our families are addressed in Canada and Internationally.

We are committed to family centered care.  All research initiatives derived from this project will have this as our guiding principle.  Thank you to our remarkable parents and supporters that are making changing the face of Idic15 care possible .