Maria, a former ballerina who is also living with a rare disease, voices the challenges of living with a rare disease: “Pain is normal. My heart doesn’t always work the way it should. This is an invisible disease. But we exist, and it hurts.”
Around the world, approximately 300 million people live with one of the more than 7,000 rare diseases. Some, like Maria, feel invisible. To ensure that patients feel seen and the challenges they face are understood, it is critical their voices drive the conversation.
“People diagnosed with a rare disease are certainly not defined by the disease. They are students and siblings, friends and confidants, educators and advocates,” said Shannon Resetich, Global Head of Rare Diseases at Sanofi. “Their voices, perspectives and life experiences are very important and by listening and learning from one another, we can improve patients’ lives around the globe."
Join us as we take a virtual journey around the world—from Brazil to Kenya, Thailand, the United States and, Spain—Sanofi celebrates people living with rare diseases and the incredible work they do in the community.
With these patient voices driving progress, a global ecosystem of patients, caregivers, advocates, healthcare providers, researchers, policymakers, and industry leaders have stepped up to begin addressing the many challenges associated with living with a rare disease.