2: Adjusting to the Diagnosis

Even while raregivers are waiting for test results, coordinating care with healthcare providers, and navigating insurance, they still have to find ways of managing their loved one’s symptoms. Raregivers say they spend a lot of time and energy contacting and liaising with providers and specialists, sourcing and acquiring adaptive equipment, and seeking and accessing support services. Raregivers are often doing all of these tasks whilst also managing the disparate needs of other children and members of the family and planning for their loved one’s future care.