In this special episode of I Care for Rare, host Sherrilynne Starkie and Sandra Markus, founder of I Care for Rare, welcome Wes Michael to the show in honour of International Rare Disease Day.

Helen Ries, the co-founder of Siblings Canada, part of the Canadian Centre for Caregiving Excellence, shares her personal and professional insights on the critical role siblings play in caring for people with disabilities or rare diseases. Helen became the carer of her brother Paul when they lost their parents suddenly and in close succession. It’s been a 10-year journey in getting the support they need so that Paul can live his best life, and, in turn, Helen and her husband can too.

Personal Trainer Shaun Kehoe opens up about his rare condition involving a series of brain surgeries and an epilepsy diagnosis. He’s found solace and strength in fitness and has dedicated his career to helping others build their strength and feel better through physical activity. Unfortunately, many of those who need his services the most can’t get access to the necessary funding.

Carl Weatherall discusses the challenges of parenting his child with complex needs into adulthood and the resulting social isolation his family has endured.

Jen Schultz is a parent who is in the front lines of caring for a one-of-a-kind young woman. Her daughter Olivia is the only person in the world to be diagnosed with her rare disease. She has very complex needs and she and Jenn, as her carer, face many challenges.

Tammie Moretton is a parent who has journeyed the intricate road of caring for and raising a child with complex needs, and who sheds light on the challenges faced by such families in Canada.

Sandra Markus, the visionary behind the I Care for Rare campaign shares her personal journey and the mission to create a collective voice for individuals, families, and caregivers living with rare diseases.