Policy as a Pathway - Advocating for Rare Disease, Cri Du Chat, Disability and Palliative Care with Lindsey Topping - Schuetz

Once Upon A Gene · Nov 9, 2023 · 44m

ONCE UPON A GENE - EPISODE 205

Policy as a Pathway - Advocating for Rare Disease, Cri Du Chat, Disability and Palliative Care with Lindsey Topping-Schuetz

Lindsey Topping-Schuetz is a parent to seven-year-old Owen, who has cri-du-chat syndrome, also known as 5p-. Lindsey focuses her advocacy work on government policy and she joins me to share her tips and advice if you want to get involved in similar advocacy efforts.

EPISODE HIGHLIGHTS

Can you tell us about yourself, your son Owen and where your rare disease journey started?

My husband and I have one son, Owen, who just turned seven and he's…