Episode Notes
The challenges and triumphs of living with a rare disease. Leslie Baldwin shares her personal journey with Common Variable Immune Deficiency and Ehlers-Danlos Syndrome. You’ll hear what fueled her passion for advocacy and the creation of Michigan Rare (MI-RARE). Together, they discuss the power of community, the importance of patient empowerment, and how collaboration with policymakers can expand access and resources for those living with rare conditions.
Takeaways
Advocacy is essential for the rare disease community.
Building connections provides vital support.
Patients should feel empowered to speak up for their health.
Collaboration with policymakers can drive positive change.
Storytelling inspires and unites the community.
Engagement raises awareness and strengthens support networks.
Advocacy days introduce rare disease issues to lawmakers.
Recognizing unique challenges leads to better understanding.
Coalitions amplify the collective voice of rare disease advocates.
Empowering patients and caregivers enhances quality of life.
About Leslie Baldwin
A Michigan native now living in Holt, Leslie is a rare disease advocate. She co-founding MI-RARE, a foundation uniting rare disease voices across Michigan, alongside Kayla Miller, Kathi Luis, Kortney Lee, Chris Draper, and Laura Bonnell.
Her advocacy experience is wide-ranging: she has worked with Autism Speaks, National Organization for Rare Disorders (NORD), The EveryLife Foundation, NIH, CMS, and the FDA. As Director of Strategic Advancement with Texas Rare Alliance, she helped pass key legislation that earned her national recognition as a finalist for the 2023 Rare Voice Award in State Advocacy.
On September 30th, MI-RARE will host the Michigan Rare Disease State Advocacy Day at the Capitol, a powerful opportunity for patients, families, and caregivers to share their stories with lawmakers and demonstrate that while each condition may be rare, together we are many.
To connect go to: MI-rare.org
Register for Advocacy Day opens August 4th and ends September 12th, 2025. There is a travel stipend too. Go to the MI-Rare website.
To connect with Leslie Baldwin: leslie@mi-rare.org
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