A rare disease diagnosis is often accompanied by an array of physiological and psychological challenges for both patients and caregivers. In this session, rare disease patients and a licensed social worker who supports people with complex illnesses will share firsthand experiences, strategies for coping and skills to help people with rare conditions live meaningful and …
Identifying the right team of health care providers and getting specialists to communicate with one another for effective, comprehensive care can be a challenge. This session will explore strategies patients and caregivers can leverage to establish a knowledgeable care team and to connect them appropriately.
This session will explore one person’s perspective of living through a diagnostic odyssey and living with an invisible, rare disease. The speaker will share the positive and encouraging life lessons she has learned throughout her journey and how her experiences changed her outlook on life with a rare disease.