Arrangements can be made for earlier departures

There is nothing more powerful than being a parent who understands the complexities of life with a rare disease and is focused and driven. Patricia will share about the struggles and triumphs of the diagnostic odyssey and highlight the importance of the role of the caregiver.

Healthcare providers, researchers and patient organizations are working to improve the diagnosis, treatment, and care of rare disease patients. This session will highlight approaches to collaborative care that benefit rare disease patients and their families, currently available technologies and treatments, and possible advances in the future.

Some patients with rare conditions do not receive an accurate diagnosis until they are adults, and some rare conditions do not manifest until adulthood. Speakers in this session will discuss the unique challenges of living with a rare diagnosis after years of uncertainty or relatively good health.

This session will discuss ableism as experienced by disabled parents with rare diseases from an individual, community and systemic perspective. The presenter will speak from both professional and personal experience.

As children with rare diseases approach adulthood, their families often worry about what the future may hold. This session will explore how families can work with their care teams to navigate this transition successfully.