Welcome to Episode 2 of Rare Together. This episode follows a slightly different format because we are joined by one guest this week, Megan from New York, USA. Megan is a mother to her son, who has been diagnosed with FOXG1 syndrome.FOXG1 syndrome is a rare genetic neurodevelopmental disorder caused by a mutation in the FOXG1 gene. This gene is essential for early brain development and, when impaired, causes cognitive and physical disabilities.Join us for a conversation with Megan as she shares her journey into rare disease activism, her experience as a parent to a child with FOXG1 syndrome, and her drive to help other parents like her. We will also discuss Rare Parenting Magazine and The Rare Disease Children's Fund, which Megan and her husband started to raise awareness for FOXG1 and provide support and resources for parents of children with rare diseases.
Andrew Grant returns as host and facilitates this incredible conversation; Andrew is a highly experienced medical research consultant with LDA Research, an international medical market research organisation working in the pharmaceutical industry and medical device sectors.We’ve also created a growing and supportive community of people from across the globe affected by rare diseases. If you or someone you care for is affected by a rare disease diagnosis, you can join the conversation online by joining our private Facebook group, the Rare Disease Network (https://www.facebook.com/groups/rarediseasenetwork).Learn more about the Children’s Rare Disease Fund: https://www.thecrdfund.org/ Read Rare Parenting magazine here: https://rareparenting.com/