Kedrion Biopharma recently participated in the 75th Annual Bleeding Disorders Conference in National Harbor, Maryland, United States.
At the conference, through a grant to the US National Hemophilia Foundation (NHF), Kedrion supported the Plasminogen Deficiency Foundation in a roundtable for patients with Congenital Plasminogen Deficiency (CPD). The grant also provided travel assistance to patients who would otherwise be unable to attend. Kedrion team members, along with the Plasminogen Deficiency Foundation and other rare disease advocates, also hosted patients at an Ultra Rare Networking Hour.
For the medical community in attendance, Kedrion submitted five posters on subjects relating to research and treatment of Plasminogen Deficiency and other rare diseases including Thrombotic Thrombocytopenic Purpura (TTP) and Factor X Deficiency.
“It is our privilege to speak with patients who fight ultra-rare diseases and bleeding disorders. As a company dedicated to fighting rare diseases, our mission at Kedrion is to produce medicines that help patients fight those diseases,” said Bob Rossilli, Chief Commercial Officer at Kedrion. “Working with organizations like the Plasminogen Deficiency Foundation and the National Hemophilia Foundation helps to provide patients, families and caregivers with the resources that they need.”
Plasminogen Deficiency is an ultra-rare genetic condition that occurs when a person has a mutation in both copies of the gene for plasminogen. It causes ligneous (wood-like) growths on mucous membranes in various areas of the body. Through the Plasminogen Deficiency Foundation, those affected can connect with other patients and families, access resources on insurance and treatment, and connect with a community.
“Dealing with a rare disease can be scary and isolating,” commented Rebecca Bialas, Co-Founder of the Plasminogen Deficiency Foundation. “Education and resources, along with the support of an empathetic community can help alleviate some of this burden.”
