Patient and doctors stand near the entrance to a circular maze.
Living with a rare disease impacts individuals and their family/caregivers, both physically and mentally. This podcast will share insights and perspectives directly from Erica Barnes and provide strategies that the interprofessional health care team can utilize to better support those impacted by rare diseases such as leukodystrophies.
Patient and doctors stand near the entrance to a circular maze.
This activity will explore recent advances in the diagnosis and treatment of leukodystrophies, including current clinical trials. It will also share insights and perspectives from individuals and their family/caregiver(s) and provide strategies to support their well-being.
This activity will review how patient-provider interactions can be more supportive of the individual’s needs, how to take a full history and perform an inclusive and affirming physical exam, and how health information can be thoughtfully documented to provide accurate information regarding health issues, screening recommendations and risk prevention.
Patient and doctors stand near the entrance to a circular maze.

Activity description

A disease is considered “rare” if it affects fewer than 200,000 individuals in the US. Uncovering the genetic roots of rare diseases and using those insights to develop new treatments is an ongoing process.

Activity description

You will need to login using your OptumHealth Education account or create a new account.

Activity description

You will need to login using your OptumHealth Education account or create a new account.

This activity will discuss emerging therapies for DMD and the importance of incorporating a personalized interprofessional care plan, along with the role of health disparities and how these impacts access to care and outcomes for these individuals.
young African American girl in a bed with her teddy bear next to her, a doctor or nurse in blue scrubs with a stethoscope is next her; they are both smiling
This podcast will focus on the connection between SDoH and how they may impact access to care, treatment and health outcomes for children with rare and CMC. Listeners will be provided with strategies and resources that can address these negative effects. The importance of access to personalized care that they require to live their healthiest lives will be discussed.
young African American girl in a bed with her teddy bear next to her, a doctor or nurse in blue scrubs with a stethoscope is next her; they are both smiling
This activity will focus on the connection between SDoH and how they may impact access to care, treatment and health outcomes for children with rare and CMC. Learners will be provided with strategies and resources that can address these negative effects. The importance of access to personalized care that they require to live their healthiest lives will be addressed.

Activity description

Duchenne muscular dystrophy (DMD) has received recent national media attention. A rare genetic disorder of progressive muscular weakness, DMD typically affects males.

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