On this episode of Raising Rare we talk with Neil Ead, a 40 year veteran of the nursing field who has focused his career on pediatrics and more specifically chronic care. Neil discuses with our cohosts the importance of preparing in advance for the transition from pediatrics to adult care. This process includes finding replacements for most to all members of the care team and how hard this can be for the team members and the family.

On this episode of Raising Rare we talk with Megan Nolan, a rare mama working to make a difference for other Rare Families. Megan has launched the online magazine Rareparenting.com in an effort to provide rare families with resources that may be beneficial to them.

Listen along as our hosts discuss the different obstacles she has faced and why certain aspects of her son’s journey with FOXG1 have taken so long.