Creating Connections in a Fragmented Landscape

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. 

Like so many other rare families, Megan has experienced the trials and tribulations of the healthcare system and how important it can be to move to the right location.  She and her husband decided to use their skills and resources to build The Children’s Rare Disorders Fund (https://www.thecrdfund.org/) to help support R&D.  She wants the fund to help small disease organizations work together and reduce duplication of effort.  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.

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