Agenda for Living Rare, Living Stronger 2022
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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.
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.
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 impactful lives.
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.
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.
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.
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.
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.
Arrangements can be made for earlier departures
*All times are EST.
**Agenda is subject to change.
***By attending this event, I am granting the National Organization for Rare Disorders (NORD) permission to use my image(s) and quotes from the program, whether in a screenshot, photo, or as a recording, for purposes including but not limited to enduring archived recording and/or transcript of the event, marketing and/or promotions.