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Confessions of a Rare Disease Mama

Jillian Arnold

Join me every week as I navigate the ups and downs, and everything in between of the crazy stressful, but always beautiful life of being a rare disease parent.

PublishesWeeklyEpisodes44Founded2 years ago
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ParentingKids & FamilyMedicineHealth & Fitness

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Artwork for Confessions of a Rare Disease Mama

Latest Episodes

This week I sit down with founder and host of The Rare Life, Madeline Cheney. She started her podcast in 2020, but the seed was planted 3 years prior—when doctors found troubling results at her 20-week ultrasound that pointed to a rare syndrome durin... more

10 days ago

This week I sit down with the beautiful, wise and talented, Alena Kupchella Gourley. Alena is a Licensed Social Worker, Clinical Hypnotherapist, psychic, medium and spiritual guide, who specializes in hypnotic healing and past life regression. more

3 months ago

Its been a whirlwind month, so Im catching you all up on whats been going on with us lately during this episode. I also touch on some of the inevitable feelings of jealousy I felt over the holiday and how I was able to move past them. Happy Listening... more

4 months ago

This week I have my friend, Brittany Markham, on the podcast to chat all things fundraising! Guys, I am in awe of all that Brittany has been able to accomplish since her son Damians ASMD diagnosis. She has raised over a million dollars toward researc... more

5 months ago


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5.0 out of 5 stars from 43 ratings
  • Incredible Rare Disease Podcast

    Jillian is an amazing rare disease advocate for her beautiful children and puts a lot of thought into each of her podcasts. I wish podcasts like hers were available when my son was diagnosed. It’s so reassuring to hear experiences of other rare parents because it’s a tremendously different, challenging, emotional, and life-changing journey parenting a child with a life limiting illness.

    Apple Podcasts
    United States7 months ago
  • Best rare disease parent podcast out!

    Kudos to Jillian for taking the time to put this podcast out into the world. As a mama of a medically complex kiddo with a rare, terminal genetic disease, it means so much to have someone out there who gets it. Her words and those of her guests make me feel so much less alone. more

    Apple Podcasts
    United States9 months ago
  • Thank you

    Fellow rare disease mama ❤️ sharing your story has been such a blessing to hear! Thank you for taking the time to do this!

    Apple Podcasts
    United States10 months ago
  • Well done and so needed

    This podcast is such a help to rare disease families like mine. Probably true for anyone facing complex medical care. more

    Apple Podcasts
    United States2 years ago
  • Heartfelt and real

    I too am a mama to a medically complex child- although he doesn’t have a rare disease. I laugh and cry with you while listening to your episodes. You put words to so many thoughts and feelings that are hard to express to just anyone. Thank you for your honesty and thoughtfulness!

    Apple Podcasts
    Kova's Mommy
    United States2 years ago

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