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Rare Together
LDA Research
14 episodes
2 weeks ago
Welcome to Rare Together, the podcast series produced by LDA Research. Join us as we bring together individuals living with rare diseases to share their personal stories and experiences in a series of one-to-one conversations. Rare Together offers individuals, including those living with rare diseases, caregivers, family members, and healthcare professionals, the opportunity to hear from others affected and gain deeper insights into the unique complexities associated with different rare diseases. Read more and apply to be a future guest: https://ldaresearch.com/rare-together
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Health & Fitness
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All content for Rare Together is the property of LDA Research and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.
Welcome to Rare Together, the podcast series produced by LDA Research. Join us as we bring together individuals living with rare diseases to share their personal stories and experiences in a series of one-to-one conversations. Rare Together offers individuals, including those living with rare diseases, caregivers, family members, and healthcare professionals, the opportunity to hear from others affected and gain deeper insights into the unique complexities associated with different rare diseases. Read more and apply to be a future guest: https://ldaresearch.com/rare-together
Show more...
Health & Fitness
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“I think rare disease has a branding problem” featuring Megan
Rare Together
48 minutes 5 seconds
1 year ago
“I think rare disease has a branding problem” featuring Megan

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/

  • (0:00) Podcast introduction
  • (0:34) Introducing Megan
  • (2:55) Megan’s experience as a first-time mother
  • (3:52) FOXG1’s impact on sleep
  • (6:01) Finally getting a diagnosis
  • (9:04) “Most kids with FOXG1 do have a shorter lifespan”
  • (10:06) The journey to fundraising and activism
  • (15:03) How does fundraising work?
  • (20:35) Megan’s motivation for activism
  • (22:49) FOXG1’s impact on communication
  • (27:23) Gene therapy and drug repurposing for FOXG1
  • (28:26) Launching Rare Parenting Magazine
  • (35:49) The need for global awareness
  • (38:38) “Rare diseases are rare, but collectively we are not”
  • (39:34) Megan’s experience with genetic testing
  • (45:41) How to get involved with the CRD Fund & Rare Parenting Magazine
Rare Together
Welcome to Rare Together, the podcast series produced by LDA Research. Join us as we bring together individuals living with rare diseases to share their personal stories and experiences in a series of one-to-one conversations. Rare Together offers individuals, including those living with rare diseases, caregivers, family members, and healthcare professionals, the opportunity to hear from others affected and gain deeper insights into the unique complexities associated with different rare diseases. Read more and apply to be a future guest: https://ldaresearch.com/rare-together