In Partnership with Global Genes, Bleeding Disorders Alliance Illinois Hosts Inaugural Ultra-RARE Bleeding Disorder Meet-Up Conference

Whereas inherited common bleeding disorders like hemophilia are often identified at birth, ultra-rare bleeding disorders can take many years to properly diagnosis. These conditions include deficiencies of coagulation factors fibrinogen, factor (F)II, FV, combined FV and FVIII, FVII, FX, FXI, FXIII, and congenital deficiency of vitamin K-dependent factors (VKCFDs). The incidence of these conditions is between 1 in 500,000 for FVII deficiency to 1 in 2 to 3 million for prothrombin and FXIII deficiencies. For comparison, hemophilia generally occurs in 1 in 5,000 male births.

“We have been a proud leader and advocate for individuals and families of those with rare bleeding disorders, providing vital support since 1949,” said Bob Robinson, Executive Director of Bleeding Disorders Alliance Illinois. “The Ultra-RARE Bleeding Disorder Meet-Up Conference is the first time there has been a gathering in the United States for this particular group of bleeding disorders, and it’s essential we provide our community with the empowerment and resources to speak with media providers, make connections and build a support system. By sharing collective knowledge, we can help ensure those with these bleeding disorders can understand their conditions and live healthy, active, and fulfilling lives.”

Over three days, participants will hear from leading experts, including:

• Michael Tarantino, MD, Bleeding & Clotting Disorders Institute
• Stacey Feuer, PhD, Director, Health Psychology Department at Duly Health and Care
• Iftikar Haider, PHD, Applied Linguistics, University of Illinois, Champaign-Urbana
• Maria E. Santaella, MSN, RN-BC, CPHON, National Hemophilia Foundation

The inaugural Ultra-RARE Bleeding Disorder Meet-Up Conference is made possible through a grant from Global Genes, a leading rare-disease patient advocacy organization, as part of its RARE-Meet Ups program, which aims to fund critical education and much-needed in-person collaboration for rare disease patients, caregivers and advocates.

Scholarships for accommodations, food and transportation are available. For more information and to register, visit: https://www.bdai.org/ultrarare-community-meetup-conference

About Bleeding Disorders Alliance Illinois
The Bleeding Disorders Alliance Illinois (BDAI) is a Illinois, not-for-profit corporation, providing individuals and their families with inherited bleeding disorders with education, support advocacy, research, and counseling services since 1949. We exist to improve the quality of life for our people with these conditions by providing unbiased information and resources allowing them to live healthy and active lives. These rare disorders, which affect about 1% of the general population, are often difficult to diagnose and some of the costliest to treat. The ability to access reliable and objective information is critical soon after the initial diagnosis and throughout care. BDAI serves as the connection between our community and the many medical providers, treatment centers, public and private insurance agencies, and government programs. The organization offers a welcoming place for everyone with an inherited bleeding disorder to meet, interact, and share information and advice. For more information please contact BDAI at 312-427-1495 or [email protected] or visit our website at www.bdai.org.

About Global Genes
Global Genes is a 501(c)(3) nonprofit organization dedicated to overcoming challenges facing the more than 400 million people worldwide living with rare diseases. We are a globally connected, collaborative, multi-stakeholder community that supports global innovation and equitable access to diagnosis, treatment, services, care and participation in research and advocacy. Together with our partners, we provide programs, resources, tools and insights to inform, equip and empower patients, caregivers and advocates to drive progress within and across rare diseases. If you or someone you love has a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or visit our Resource Hub.