Rare diseases present urgent challenges – together, we can help overcome them.
This Rare Disease Day, we proudly share the first vignette in our Voices of Rare Disease series: 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, shared as part of Lumanity’s commitment to elevating the voices leading the fight against rare disease and working to advance care for those who need it most.
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 at contact@lumanity.com to discover how Lumanity turns complexity into clarity and authentic insights into actionable strategies across rare disease and beyond.
