Megan was diagnosed with ulcerative colitis at 18 years old. Although she was diagnosed relatively quickly, what followed was a 6-year battle to find a doctor that would give her the attention she deserved. During that time, her quality of life went downhill, losing the ability to practice the sports she loved and losing some friends along the way. We discuss the voice of the patient in this interview, as Megan has taken part in Crohn's and Colitis Foundation's Day on the Hill twice.

The song Megan selected is You Will Be Found from the Broadway musical Dear Evan Hansen.

Barak has an extremely rare eye condition called ICE (Iridocorneal Endothelial) Syndrome. Because of this condition, he also developed glaucoma in one eye. In this episode, we talk about Corneal transplants, glaucoma and how to care for your eyes, but also about the advancement of technology and AI as a tool for people with partial vision impairment.

Barak selected a full album, Cowboy Carter by Beyonce.

Stiff Person Syndrome (SPS) is a rare condition that leads to painful muscle spasms. Lauren believes she had her first symptoms in early 2010s, although she was only diagnosed 5 years ago. She explains how the condition affects her body and her mobility. She also shares the impact it has had on her mental health and how she manages her energy levels to keep SPS at bay as best as she can.

The song Lauren chose is It was a good day by Ice Cube.

Mandolen Mull suffers from Crohn's Disease and Dystonia. This episode is focused on the latter, which is characterized by muscular spasm and abnormal posture, usually from a neurological origin. In Mandolen's case, it could have resulted in reduced mobility and difficulty to speak, but she was able to recover almost fully by going through various therapies. Her condition is exacerbated by stress, and she constantly has to manage her stress levels to keep control of her body. In this interview, Mandolen shares how she was able to leverage her brain plasticity to recreate functional neural pathways.

The song that Madolen chose is What a wonderful world by Louis Armstrong.

In this 2-part series with Dionne Stalling, we focus on four of the nine conditions that affect her.

In part 2, we talk about short bowel syndrome (SBS) and persistent postural perceptual dizziness (PPPD). Beyond discussing the symptoms and how the conditions affect Dionne, we address some important topics in this episode, such as the continuous fight to increase the breadth of what is covered by newborn screening, the challenges of having a restrictive diet and the under-representation of minorities in clinical trials.

The song that Dionne chose for this episode is Easy by The Commodores.

In this 2-part series with Dionne Stalling, we focus on four of the nine conditions that affect her.

In part 1, we talk about primary immunodeficiency and chronic inflammatory demyelinating polyneuropathy. In Dionne's case, both conditions are linked and she shares how. Dionne is a single mum who has had to juggle with a lot of doctor's appointments whilst raising her two children. She opens up about the toll living with rare diseases has had on her family. We also talk about patient advocacy and the organization she created, Rare and Black.

The first song Dionne selected is Heaven Knows by Lalah Hathaway.

Rachel's daughter, Charlie, was born with the rare condition GA2 (Glutaric Aciduria type 2). It was identified very early on thanks to newborn screening, but unfortunately it has a very poor prognosis when diagnosed so early. We talk about how GA2 affected Charlie, the importance of communities for parents dealing with such conditions, and the benefits of grief counseling. Rachel also shares the beautiful life lesson Charlie has taught her.

The song Rachel selected is I reach for the sky by Social Distortion.

Danielle's journey with idiopathic pathological ketotic hypoglycemia started with her children's diagnosis, although she had it from a young age herself, but was mis-diagnosed. In this interview, we talk about how this rare disease affects her body. She describes the complexity of raising children with a strict diet, where food intake becomes source of anxiety for parents and child. We also discuss the impact patient advocates have in our world, and her contribution to an initiative by the European Parliament.

The song that Danielle chose is Nothing Else Matters by Metallica.