Description:

In Canada, our public medical system is based on the premise that medical care is provided in a family centered manner, a philosophy that prioritizes the family’s role in caregiving. It’s a partnership between the family and healthcare providers that focuses on the family’s strengths and needs. This aligns perfectly with the focus genetics services have in evaluating patients with genetic disorders and their implications for families at large. Partnering in a more meaningful way with patient groups is a strategy that organizations like CCMG and CAGC would like to embrace. This workshop will tackle a variety of concrete approaches to help implement this goal.

Objectives

At the end of the session, participants will be able to:

  • Describe common patient/families challenges pre and post diagnoses in the rare disease space
  • Outline how information and support given by the Canadian iRARE Centers and patient organizations for specific rare genetic diseases can help and empower patients, parents, and other caregivers.
  • Identify the unmet needs of caregivers of children with rare disorders in order to better support the child and family.

Target Audience: Clinical Geneticists, Laboratory Geneticists, Genetic Counsellors, Trainees, Molecular Pathologists, Medical Lab Technologists
CanMEDS Roles: Communicator, Collaborator, Health Advocate, Scholar, Professional

Speakers: 

Dr. Gail Ouellette
Dr. Genevieve Currie
Dr. Svenja Espenhahn
Karen Kelm – Fragile X Canada

Event Timeslots (1)

AM Breakout Group 2
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KC 303 - Dr. Gail Ouellette, Dr. Genevieve Currie, Dr. Svenja Espenhahn, Karen Kelm