Rare diseases present urgent challenges—together, we can help overcome them.
Talk to us to discover how Lumanity connects lived reality to evidence, strategy, and execution to improve patient experience and deliver stronger business outcomes across rare disease and beyond.
New in the series: Krystyn LaBate’s story
Our final vignette in our series introduces Krystyn LaBate, PhD, founder and Executive Director of the Cortical Malformation and Cephalic Disorder (CMCD) Foundation. Drawing on more than 25 years in healthcare and her own experience navigating a rare neurological diagnosis within her family, Krystyn built a patient community from the ground up to support families facing conditions that are often poorly understood. She reflects on where the healthcare system still falls short and how collaboration across industry, advocates, and caregivers can drive real change.
Denise Reinke’s story
The third vignette in our series features Denise Reinke, a nurse practitioner, researcher, and long-time sarcoma advocate. As current co-chair of the Sarcoma Patient Advocacy Global Network (SPAGN) and former President and CEO of Sarcoma Alliance for Research through Collaboration (SARC), Denise has spent decades working to advance research and amplify the patient voice in one of oncology’s most underfunded spaces. She shares her perspective on building momentum across a fragmented disease landscape and what it takes to forge meaningful partnerships between patients, clinicians, and researchers.
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 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
These stories from rare disease advocates and community members each offers a unique perspective on how we can work together to bring breakthrough value to patients and families worldwide.
