FORT LEE, N.J. — Kedrion Biopharma is raising awareness for Plasminogen Deficiency Type 1 (PLGD‑1), a rare genetic disorder, through a series of global virtual and in‑person events held in recognition of Plasminogen Deficiency Awareness Day on May 4.
PLGD‑1 is an ultra‑rare condition affecting approximately 1.6 per 1 million people worldwide. The disease can cause abnormal accumulation of fibrin‑rich lesions on mucosal surfaces throughout the body and, if left undiagnosed and untreated, may lead to serious complications such as vision and hearing loss, airway obstruction, recurrent infections, and fertility issues. Because symptoms often resemble more common conditions, PLGD‑1 is frequently misdiagnosed, contributing to significant delays in diagnosis, suggesting that the reported prevalence of 1.6 per million is likely an underestimation.
The goal of Plasminogen Deficiency Awareness Day is to increase understanding of this condition that frequently goes undiagnosed, promote earlier symptom recognition, and encourage timely diagnostic testing. Education and collaboration across the healthcare and rare disease communities are essential to improving outcomes for individuals living with PLGD‑1.
This year’s observance included Kedrion leadership remarks, expert perspectives from physicians experienced in symptom recognition and diagnosis, and participation from patient advocacy organizations. The program also featured interactive discussions with patients and caregivers, highlighting the real impact of delayed diagnosis and the importance of coordinated efforts to improve awareness and testing pathways.
“For Kedrion, Plasminogen Deficiency Awareness Day underscores the importance of collective action in addressing rare and ultra‑rare disease,” said Bob Rossilli, Chief Commercial Officer, Kedrion Biopharma. “Working alongside the medical community, patient advocacy organizations, and other stakeholders, we are focused on elevating awareness of PLGD‑1 and encouraging earlier diagnosis. Through collaboration, we can help shorten the diagnostic journey and improve the lives of those affected by this rare disease.”
Advocacy leaders emphasized the need for continued education and partnership to reduce diagnostic delays, which for many rare diseases can span several years.
“When your child is diagnosed with an ultra-rare disease, you quickly learn how powerful awareness can be,” said Rebecca Bialas, MD, co-founder and chair of the Plasminogen Deficiency Foundation and mother of two children with plasminogen deficiency. “Seeing the PLGD-1 community gain visibility year over year gives families hope and drives real progress. Kedrion’s ongoing efforts to support education and access to resources are making a meaningful difference for people who have waited far too long to be seen and supported.”
The event also highlighted the role of collaboration among healthcare providers, advocacy organizations, and the industry to accelerate diagnosis and improve patient support.
“Patients with extremely rare diseases often wait an average of five to seven years for an accurate diagnosis,” said Pamela Gavin, CEO of the National Organization for Rare Disorders (NORD). “Greater awareness of conditions like PLGD-1, stronger clinician education through programs such as continuing medical education, and earlier connections to specialists can help shorten that journey and improve quality of life for patients and families. Through NORD’s network of more than 46 Rare Disease Centers of Excellence across the United States, we are working to expand access to specialized care and expertise so people living with, or suspected of having, a rare disease can receive appropriate care more quickly.”
Through continued collaboration with the medical community and advocacy partners, the company remains committed to advancing awareness, education, and earlier identification of individuals affected by PLGD-1.
Despite a complex and often lengthy patient journey, PLGD‑1 can be identified through a simple laboratory test. While fewer than 100 cases have been formally diagnosed in the United States to date, prevalence estimates based on published rates suggest the true number of people living with PLGD‑1 may be higher than currently reported. Increasing awareness among healthcare professionals and the public is critical to enabling earlier diagnosis and ensuring appropriate care.
For patients with chronic or recurrent inflammatory conditions that do not respond to standard treatments—such as conjunctivitis, otitis media, chronic cough, gingivitis, or endometriosis—these symptoms may signal the underlying condition of plasminogen deficiency type 1 (PLGD‑1). PLGD Awareness Day provides an opportunity to raise awareness of these red flags and encourage both patients and healthcare providers to consider appropriate testing, helping to shorten the path to diagnosis and support timely access to care.
To learn more about Plasminogen Deficiency Type 1 and how to help raise awareness, visit https://www.plasminogen.com.
About Kedrion Biopharma
Kedrion Biopharma collects and fractionates blood plasma to produce and distribute plasma-derived therapies for rare, ultra-rare, and debilitating conditions like Coagulation and Neurological Disorders, Immunodeficiencies, and Rh sensitization. We employ more than 5,400 people worldwide and our industrial network includes 68 plasma collection centers in the United States and 8 in the Czech Republic, and 7 production facilities across 5 countries. We are committed to creating a world where science and care know no bounds, partnering with the medical-scientific community, institutions, patient advocacy groups, and research bodies to foster innovation and improve patient care. Every connection we make impacts someone, somewhere.
Rare but Real reflects this commitment through a long‑term awareness platform that gives visibility to stories from the community around rare and ultra‑rare diseases. Through a narrative of authenticity and care, real stories beyond labels are shared across our digital channels, helping make rare conditions more visible and understood. Discover Rare but Real and follow the stories on: Instagram, Youtube, Website.
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Jessica Fetrow
US Communications