Our insurance company approved the exome sequencing only for Ava. This is a wonderful step forward for Ava. However, Oskar and Lucy need it as well.

We also need to push for whole genome sequencing for our family.

Vision: We plan to accomplish this vision by:

• Convene experts to define measurable criteria for a diagnostic odyssey (x number of visits to y categories of specialists without reaching a diagnosis).
• Build awareness of diagnostic odysseys through sharing personal accounts representing genetic, metabolic and complex environmentally triggered conditions
• Educate general practitioners about genomic testing as a resource to circumvent diagnostic odysseys
• Advocate that genomic testing become Standard of Care for patients who meet the criteria of a diagnostic odyssey.  This will be the most effective path toward addressing the reimbursement concerns.