My rare diseases patient advocacy began in 2023, when I decided to live a more transformative life that aligned with my purpose of helping others excel. Considering my personal experience with multiple rare diseases, the mission was clear. I founded Rare Disease Advocacy to help patients and caregivers live longer, better-quality lives, navigate the complexities of the U.S. healthcare system, and influence systemic change.
For decades, chronic pain, exhaustion, and debilitating fatigue were my constant companions. I experienced unexplained pain in my fingertips (which turned blue when the temperature was cold), crushing headaches, balance problems, difficulty eating, a sleep disorder, blackouts, and a growing list of symptoms that no one could explain.
Like many people, I convinced myself that my symptoms were due to the stress of a demanding career. I gradually withdrew from social activities and time with friends while I continued to meet the relentless demands of a fast-paced global leadership role.
One day at work, I experienced a baffling 20-minute blackout. And everything changed.
As the CEO of my body, I knew it was time to demand answers about my health. But it took persistence. Ultimately, I was diagnosed with scleroderma and several other rare diseases, for which I began receiving treatment in 2017.
When my doctor told me there’s no cure for scleroderma, she casually added: we know exercise works. As an athlete, I was hooked. Training became my defense. I have trained every day since — through travel, through surgery, through agony — because it’s the most effective weapon I have against chronic pain, fatigue, stiffness, and discombobulation.
Photo by Alex Callejo Photography LLC
Learning to advocate relentlessly for myself changed the course of my life—and very likely saved it. Now, I am dedicated to helping rare disease patients take charge of their health and lives. What drives me each day is a deep commitment to spreading education, promoting self-advocacy, and providing tools and resources that empower patients to navigate their care more effectively.
I advocate at both the national and state levels to improve awareness, influence policy, and support patients and their families. With 39+ years in business and academia and 20+ years as a board director, I bring a pragmatic, disciplined, and compassionate lens to leadership and advocacy.
This work includes:
- Clinical research participant
- Illinois Patient Senator
- Consumer reviewer, Congressionally Directed Medical Research Programs, by the U.S. Department of War
- SPIN-SSLED certified support group leader
Before starting Rare Disease Advocacy, I was an executive at several Fortune 100 companies, founded a management consultancy, and wrote an award-winning book.
I have given keynote speeches around the world and served as a current or past board member of the following organizations including: HireGains, National Czech & Slovak Museum & Library, Smithsonian Affiliate, Harvard Business Review Advisory Council, MIT Sloan Management Review Editorial Board, Entrepreneur & Innovation Exchange (EIX) Editorial Board, WorldChicago, American Red Cross Mission Impact & Inclusion Advisory Council, Glisten, Big Brother Big Sister of Cedar Rapids, IA, HR.com, and others.
Want to share your self-advocacy story? Write to us with the subject “My Self-Advocacy Story.”
karen@rarediseaseadvocacy.org