With a rare disease diagnosis comes the need to adapt — to find ways to align the needs and hopes of the patient and family with the reality of the symptoms, disease progression and available therapies. But a rare disease diagnosis does not have to equate with a limited life. Patients and families have found multiple ways to make adaptation an expansion of options rather than a limitation. Also, adaption does not always have to mean change. Incorporating things that were a part of daily life before the diagnosis is critical to try to keep the balance between stability and change. In this session, rare patients and family members will talk about how they found that balance and share strategies on how to adapt to the new opportunities and challenges.
Speaker: Kristin Smedley, President and Co-Founder, Curing Retinal Blindness Foundation
Speaker: Amy Price, Metachromatic Leukodystrophy Parent Advocate
Speaker: Perla Aparicio, CSW, Certified Social Worker, Champions Action Network
Day 1, Track 1