Ask About Aarskog Podcast Series

by Lisa Hume

The Aarskog Foundation is the world’s only patient and parent-led organisation for the X-linked rare genetic condition Aarskog Syndrome. Our Ask About Aarskog campaign seeks to raise awareness around the importance of early diagnosis for children and raise funds towards vital research critical to their future development, health and education. Listen to our podcasts to hear from patients, parents and carriers of Aarskog Syndrom... Read more

Podcast episodes

  • Season 1

  • S01 E06 - Jimmy

    S01 E06 - Jimmy

    In this episode, we chat with Jimmy who has Aarskog Syndrome. Listen to hear how he has had to cross borders to get the right medical help. This is also the first time Jimmy has spoken publicly about his condition so we are hugely...

    18:28
  • S01 E05 - Ejnar

    S01 E05 - Ejnar

    In this episode, we chat with Ejnar who has Aarskog Syndrome. Listen to hear how he has overcome challenges of not being believed and getting the right help and support. Plus we chat about his hopes for the future for children who...

    12:58
  • S01 E04 - Debbie

    S01 E04 - Debbie

    In this episode, we chat with Debbie who is a mother to two boys with Aarskog Syndrome and she is a confirmed carrier of the FGD1 Gene. Listen to hear her story about getting the right medical advice and how she is affected as a c...

    12:04
  • S01 E03 - Velvet

    S01 E03 - Velvet

    In this episode, we chat with Velvet who is a mother to a son with Aarskog Syndrome. Listen to hear her story and advice for parents of a child with a rare disease. Editing - Tom CampbellMusic - Easy Lemon 30 Second by Kevin MacLe...

    27:33
  • S01 E02 - Shea

    S01 E02 - Shea

    In this episode, we chat with Shea who is a mother to a son with Aarskog Syndrome and she is a confirmed carrier of Aarskog. Listen to hear her story and advice for carriers of a rare genetic condition. Editing - Tom CampbellMusic...

    11:02