Patients are their own most important advocates, and global biotherapeutics leader CSL Behring has renewed its commitment to helping empower them with the announcement of the latest round of LEAD Grant awards. CSL Behring established the LEAD grant program in 2008 to help support the important advocacy work of patient groups in tackling complex legislative and public policy issues.
The current LEAD Grant recipients are the Immune Deficiency Foundation (IDF), Tennessee Hemophilia and Bleeding Disorders Foundation (THBDF), Hemophilia Foundation of Southern California (HFSC) and Gateway Hemophilia Association (GHA) in Missouri.
The IDF will use its grant to help fund the Creating Advocates, Enhancing Access pilot program in Florida and Indiana. The pilot is designed to help IDF develop strong grassroots initiatives on behalf of patients with immune deficiencies in these states.
THBDF was awarded a LEAD Grant to build a state advocacy program and train volunteers in advance of their first Legislative Day in Nashville. Both HFSC and GHA were awarded LEAD Grants to help support teen advocacy programs to provide advocacy training for teenagers.
“As an established and growing global biotherapies leader with a history and focus in treatments for rare and serious conditions, we understand the challenges that patients with rare diseases face every day,” said Dennis Jackman, CSL Behring’s senior vice president for global healthcare policy and external affairs. “Access to care should not be one of them, which is why CSL Behring’s role as an advocacy leader is so important to us. We will continue to work to enhance the capacity and ability of patient groups to inform and impact public policy decisions, and ensure access to therapies and services.”
To date, CSL Behring has awarded 59 LEAD grants to patient advocacy organizations totalling $764,000.
Marcia Boyle, president and founder of the Immune Deficiency Foundation stated, “The Immune Deficiency Foundation greatly appreciates our collaboration with CSL Behring to educate and empower individuals with primary immunodeficiency to be effective advocates. We are looking forward to strengthening programs in Indiana and Florida to help eliminate the many barriers to care this rare disease community encounters.”
HFSC’s executive director, Michelle Kim, said the grant will allow the foundation to invest in the next generation of leaders by establishing the SoCal Teen Leadership Summit. “Teens will focus on developing advocacy skills with emphasis on leadership and state legislative issues,” said Kim. “Using these skills, they will create and launch a campaign addressing needs within the bleeding disorders community.”
CSL Behring also established the Raise Your Voice! Program, which not only provides additional resources with which to impact public policy, but also provides training for the next generation of advocates.
Proposals are being accepted for the next LEAD Grant cycle. The deadline for submitting a proposal is April 30, 2016. For more information visit LEAD Grant.
About CSL Behring
CSL Behring is a global biotherapeutics leader, which is driven by its promise to save lives. Focused on serving patients’ needs by using the latest technologies, we develop and deliver innovative therapies that are used to treat coagulation disorders, primary immune deficiencies, hereditary angioedema, inherited respiratory disease, and neurological disorders. The company's products are also used in cardiac surgery, organ transplantation, burn treatment and to prevent hemolytic disease of the newborn.
CSL Behring operates one of the world's largest plasma collection networks, CSL Plasma. The parent company, CSL Limited (ASX:CSL), headquartered in Melbourne, Australia, employs more than 16,000 people with operations in more than 30 countries. For more information visit www.cslbehring.com and follow us on www.Twitter.com/CSLBehring. For more information about CSL Behring visit www.CSLBehring.com or follow us at www.Twitter.com/CSLBehring.
Name: Chris Florentz