Rare diseases present urgent challenges—together, we can help overcome them.
New in the series: Ella Balasa’s story
Our new vignette introduces Ella Balasa’s story. Ella has lived with cystic fibrosis (CF) since she was 18 months old. With a background in science and firsthand experience navigating CF care, she has become a powerful voice in the space, helping other patients and families advocate for themselves and find the treatments and support they need. Watch Ella’s video to hear her full story.
İpek Badırgalı’s story
The first vignette in the series shares advocate İpek Badırgalı’s powerful personal journey from a difficult diagnosis to global action. When her niece was diagnosed with spinal muscular atrophy (SMA), İpek mobilized families, led protests, and worked with media until life-saving therapies were approved in Turkey. Today, she is a leading voice for faster diagnoses, equal access to treatment, and stronger standards of care. Watch İpek’s short video to hear her story in her own words.
About the program:
Voices of Rare Disease: Perspectives Across the Community is an ongoing initiative from Lumanity to:
- Showcase authentic stakeholder voices from across the rare disease ecosystem
- Transform complexity into clarity so critical challenges and solutions are understood
- Inspire collaboration among industry, patients, caregivers, and healthcare professionals
Coming soon: Additional stories from rare disease advocates and community members—each offering a unique perspective on how we can work together to bring breakthrough value to patients and families worldwide.
Connect with us to discover how Lumanity turns complexity into clarity and authentic insights into actionable strategies across rare disease and beyond.
